Reactive Arthritis -New member's post and Questions

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Christian B
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/6/2010 12:40 AM (GMT -7)   
Hello all, I'm a new member to this site, and am anxious to hear from others about their experiences and remedies and progress with reactive arthritis. I saw that I'm supposed to make a new post to introduce myself, so I'm doing so.
As of right now, I'm at home in, fighting my newest bout with reactive arthritis. I think some of you are abbreviating Rheumatiod Arthritis and reactive with RA, for this post, I'm only referring to RA and my limited knowledge of it.
about 2 years ago now, I was eating fast food pretty regularly, one day at work, began to have a stomach "ache" after lunch, by the time night came, I was unable to stand straight up, had extreme abdominal pain, and diarrhea began the next day. I had diarrhea every 15-30 minutes thereafter for about 4-5 days, this was probably the longest and most extreme gastrointestinal sickness I had ever had at this point in life. I was 26 at the time. I lost about 10 pounds, was unable to work for a week, went to a doctor, I believe he thought I had salmonella poisoning, did not do any stool cultures to tell, just gave me anti-biotic. I got better, felt very weak, but was able to return to work. I noticed about a week later, my right ankle began to hurt, it got worse each day. After 3-4 days of this, I returned to the doctor. I was already on crutches at this point, my ankle had swollen on the inside and outside of the ankle joint, had a purple/redish tint under the skin, and was stiff to the touch in the inflammed area. The doctor gave me Zantac since my stomach was still sensitive due to the gastroenteritis I had fought off, Vicodin for pain, and antibiotics, I wish I could remember the type, but I can't, I'm guessing it was a z-pak, (Azithromycin). He could not figure out my ankle swelling, sent me to a foot and ankle doctor. He used a big needle to suck out some of the liquid in the inflammed joint, extreme pain followed. The results came back that I had no bacteria or viral infection in the joint, just a high number of white blood cells which seemed odd seeing as there was no infection. He did a stool sample, blood sample, no blood bacteria, no diseases, nothing out of the ordinary. I can't recall if I was tested for HLA B27 or not, moot point for me, I just want to be fixed. Foot doc sent me to an Arthritis expert, she reviewed what I had taken so far, put me on Prednisone for a 5-7 days, this only stiffen the swelling, the tissue got hard, but it did not lessen pain, or reduce the swelling. Back to my symptons, I understand that there are many complications from this, my only sympton/complication is right ankle swells up, fills with liquid, is a sharp and dull/ burning pain, sometimes with heat, on a scale of 1-10 it is often a 10, I often did not sleep thru at all or very little. I finished the Prednisone, this did nothing, the arthritis specialist wanted to put me on methotrexate, I took one dose, felt terrible, dizzy and weak, loss of appetite, read up on the side effects, decided not to continue the treatment. The doc told me that with the MTX, it could take 6 months to heal, without the MTX it could take the same. I chose to stop doing meds since at the time if felt hopeless. My ankle swelling reduced for the most part after about 2-3 weeks, but it took 3-4 months for the pain to go away for the most part, the joint was very sensitive to movement or running, anything could set if off into extreme pain. I am not recommending stopping your MTX treatment, I understand there can be long term damage to your joints, I myself have a bit of this. I am only telling my story to see if someone relates, or can give further insight. I was able to return to physical activity, running, playing basketball, but I have to wear an ankle brace. I do feel that glucosamine sulfate/ chondroitin pills have helped strengthen the joint when taken regularly. Doing light stretches and exercising the joint seems to help it stay loose, I cannot just jump into physical activity though or I risk injury that sets me back a week or two.
I just got sick after Valentines day, diarrhea, fever, headache, lasted 5 days. Lost 10 pounds again, probably need to change my diet. I was afraid when the sickness lasted this long, that the RA would return. It returned, same timing as before, same level of pain. This time, in between the gastroenteritis and the RA flare up, I began to lose mucus during bowel movements. This has been scaring me a lot. Some times my bowel movements are only mucus, a white color, sometimes a pink color, I am not seeing blood, but sometimes no stool at all, only mucus. I have dramatically changed my diet. I used to be a soda drinker, stopped completely. Used to eat fast food, stopped completely. I know that anti biotics kill good bacteria, I started eating 4 yogurts a day and taking a strong probiotic, this has started to help my mucus issue. I felt good until I ate meat, then the mucus returned. I don't have health insurance right now, so my only choice is do what works, eating meat doesn't work, I have begun a vegetarian diet since monday of this week, because I read that NSAID's(ibuprofen) I'm taking damages your digestive system and can cause issues with mucus in stool. I don't want to risk any more damage to my joints, but I don't want to damage my already hurting digestive system. I don't know what to do. I don't want to take methotrexate or any more steriods, I have started taking cats claw, garlic oil, oregano oil, aloe vera gel orally, cayenne for circulation, olive leaf extract, ascorbic acid, drinking electrolyte replacements for all the salts I lost, eating a vegetarian diet since my organs can't handle meat right now. I'm sorry this is a huge post, but does anyone relate to my story, or have any insight/recommendations for me?? Thank you for reading this.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/6/2010 2:00 AM (GMT -7)   

Hi Christian and welcome to HW and the RA forumsmilewinkgrin

You have been through quite a bit there.

I was wondering if you have every seen a Gastroenterologist about your gut issues just to rule out anything nasty.

It sounds like you are doing the right thing at the moment by watching what you eat and taking extra supplements.

Sorry Im not much help, hopefully someone more informative comes along:-)

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


Christian B
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/6/2010 2:13 AM (GMT -7)   
I have not been to a gastroenterologist this 2nd time around, my current employer doesn't offer benefits, and I can't afford to pay the premiums. I have been hoping drastically changing my diet permanently will prevent future complications, and aid my digestive system in healing without the use of any more pharmaceuticals, I feel like I'm suffering some damage from them, and am afraid of more liver damage from NSAIDS and Vicodin, more digestive problems as well. I currently don't have a fever, I'm staying at a consistent weight, making sure to get all essential amino acids, and enough protein and carbohydrates, so right now I'm really just kinda hoping I can get my immune system strong enough to push through this. If I have the mucus in stool or fever returns, or any other symptons persist more than 2 weeks, I feel I will have no choice but going to a gastroenterologist. Thanks for the response, I hate to say it's nice knowing there's others out there with similar issues, I wish we were all Hercules, but it's nice knowing there's others out there.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/6/2010 3:38 AM (GMT -7)   

Hi Christian,

It does make it hard for you to see specialists when you need insurance, Im from Australia and although we pay to see them we do receive some money back.

As for all these meds we have to take, I fear all the things they can cause down the track. I once whinged to my Rheumy about taking MTX for my Crohn's Disease and RA and he said if I leave my Crohn's unmedicated that it would kill me quicker than the meds I have to take for it. He put things in perspective for me, although I still feel like all my meds are poison.

You have a healthy approach to your diet and the supplements you are taking cant hurt, but hopefully help.

Keep us updated on how you are doing.

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


keep the faith
Regular Member


Date Joined Nov 2009
Total Posts : 91
   Posted 3/6/2010 7:37 AM (GMT -7)   
As SydneyJo said I'd rather have a quality of life than a quantity of life in pain and limited activity. Problems also compound when you don't take care of your health early on.
I take methatrexate and have occasional liver tests.
Your liver can heal itself and your doctor would take you off any meds that cause the problem while it heals.
I wish you well.yeah
 

Christian B
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/6/2010 3:08 PM (GMT -7)   
I just noticed a couple typos in my post,
"I think some of you are abbreviating Rheumatiod Arthritis and reactive with RA, for this post, I'm only referring to RA and my limited knowledge of it." I meant to say I'm only referring to reactive arthritis.

Sydney Jo, I kept stumbling across Crohns info while researching my own symptons online, do you have arthritis symptons as a side effect from Crohns as well, or is that a normal part of the disease? Also, is Crohns preventable, curable, hereditary, or do you maybe have a good link or site I can read about it on? I suppose that might be better so you don't have to write a whole article on here. :)

Keep the Faith, thank you for your post as well, what did you get prescribed methatrexate for? Do you have reactive arthritis also? You may have already posted something on this message board somewhere, I'm new to the site and haven't found it yet, I am interested it talking with others about the length of the pain or time of healing, etc. I was told by the rheumatologist that some people have it once in there life, and never again. I was hoping that was me, but I was wrong, I only have the arthritis sympton, and only one joint, but my left ankle has become sensitive a bit this time around, so I'd imagine if I keep getting sick, it could get worse. What medication have you gotten the best results from?

I started taking a product called Juice Plus also, it's whole food based nutrition, fruits/vegetables, right now I'll take anything I can get, I don't think I've gotten enough nutrition and this may be an extra boost for me.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 3/6/2010 5:01 PM (GMT -7)   

Hi Christian.

Yes I got my Ankylosing Spondylitis from Crohn's, there are a lot of extra-intestenal things associated with CD.

CD is not curable, it can be maintained with meds and surgery and there can be a hereditary link. although I have no-one else in my family with it. Not much is known about the cause, although a lot of theories are speculated.

I dont really know of a good site other than this one. Posting on the CD forum on here will get you good info as they are very knowledgable. If you have any questions, keep asking I may be able to help.

Take care

Jo


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


keep the faith
Regular Member


Date Joined Nov 2009
Total Posts : 91
   Posted 3/7/2010 7:58 AM (GMT -7)   
Christian
Hello
I started mtx in December for rheumatoid arthritis. I was fine befor August when my hands became swollen. Xrays were OK but the sed rate was up and my doctor sent me to a rheumatologist. After many tests I was diagnosed with RA and put on mtx starting with a low dose.
You will see posts from me in January because after starting 20 mg and taking them Thursdays I threw up. Got lots of good advice here and after 2 weeks of vomiting my body adjusted.
I also take prednisone. I am down to 2 1/2 mg or can go to 5 mg depending how I feel for pain.
 I take tramadol, a  generic for pain which is not a NSAID and does not have increased risk of stomach ulcers or internal bleeding. Since you have a concern on NSAID's you may want to try tramadol. It is a prescription. In fact my rheumy said tylonol is acceptable for me but no NSAIDs to avoid any stomach issues (which hadn't been a problem)
Are you seeing a rhuematologist? Several friends with various types of RA (and there are 100 kinds) insist people with RA need a rhuematologist. They have not found any primary physician with extensive expertise in this area and I agree.
All medicines have some potential side effects. Even if one person has the worst of them it must be reported. The benefits need to be discussed with your doctor to see if they outweigh the problems. Look at quality of life. Let's enjoy the time we have here as best we can
I wish you luck and hope you have a 'forever' remission.  :-)

Christian B
New Member


Date Joined Mar 2010
Total Posts : 6
   Posted 3/8/2010 11:41 PM (GMT -7)   
Hello all, just wanted to give an update, and some other info.......
The first time I had a swollen/inflammed ankle due to reactive arthritis, at one point, about five days into the onset of the pain and inflammation I was unable to walk, had to crawl to the bathroom until I borrowed some crutches from a neighbor. I had about 5 days of this level of pain and inflammation. It took around 3 weeks from the onset of pain for it to begin being less painful. I did antibiotics, about 9 days of prednisone, and one methotrexate shot, then stopped taking the medication.
This time around, I only had 2 days of the highest level of pain/inflammation, and about 10 days for the whole cycle of onset of the arthritis to the peak to the beginning of it going away. It seems to be shortened by about 30%.
I want to make it clear that again I am no doctor, not trying to prescribe anything, or suggest to stop/start any medication, I ONLY want to share what has helped me with others, maybe someone with reactive arthritis, specific to the joints can get some improvement. Also, maybe someone can tell me if any of these natural supplements can cause issues if mixed, or if i'm taking too much of anything.
After the bout with gastroenteritis, my digestive system was weak, doctor had given me Tamiflu, I don't know if this irritated it further or if the irritation was just from the sickness and ibuprofen.
For the digestive side, and the mucus in stool issue, I started taking:

4-6 oz. of Aloe Vera Gel daily, before meals, really helped to be able to eat without stomach pain/irritation
Probiotic with 12 strains, 50 billion organisms, every day in the morning before food
I had stated before I can't handle meat right now, so I have stayed away from that, all the junk food with the high fructose corn syrups and articial flavors and sugars and caffeine, seemed to help.
3/4 gallon of water throughout the day.
electrolyte replacement tablets for all the salts lost during diarrhea

After about 7-10 days, digestive system is returning to normal. I know I took a risk in not going to a doctor, but again I don't have insurance, and was really hoping these things would help, if you have large amounts of mucus in stool, or blood in stool, I still strongly recommend going to a doctor, these things are not replacements for a doctor, just saying they helped me tremendously.

To help rebuild my immune system and help to fight off the sickness once I could eat again after the intial gastroenteritis/food poisoning/whatever it was, I started taking:

9mg Garlic Oil, gel capsules, 3 times a day
1000 IU Vitamin D3 gel capsules, 2 daily ----- Anyone know if this is too much?
.2mL/181mg Oregano Oil gel capsules, 2 daily
825mg Olive Leaf Extract, 2 daily
1000mg Ascorbic Acid(vitamin C complex) 1 daily
4 capsules, 2 whole food fruit, 2 whole food vegetables from Juice Plus daily

And to help fight inflammation I tried to add things that wouldn't further toxify me this time, I hoped that with less chemicals to process, maybe the inflammation would go away faster? (only a guess, but again, I'm not suggesting to stop taking meds, only sharing my personal experience) I have been taking:

500mg Glucosamine Sulfate/400mg Chondroitin Complex pill, 3 daily
some kinda of plant sterol/coq10/omega 3 pill with around 600mg of omega 3/6 2 daily
334mg Cats Claw capsules, 2 daily
400mg Turmeric capsule with 22mg of Curcuminoids in capsule (curcumin is supposed to be a natural inflammation fighter, and it comes from turmeric)

Today, my ankle is still very swollen, but I have a better range of movement with less pain, and can almost walk with no limp and without a cane.
I can't narrow down exactly what I took did the trick, I started taking all these supplements around the same time, within a 4 day span. I do know that something is different this time from my last reactive arthritis battle, the whole process has been less severe, (except the food borne illness/gastroenteritis, that was horrible, but I also haven't had the best diet and wasn't taking any of these supplements at that time). And again, I really don't want to come across like I think I have the answer to anything here, I just did something different this time that seemed to help. This is is only my second inflammation from reactive arthritis.
Just thought I would post this stuff, maybe someone will read this and see some of these supplements, read up on them, and maybe have some good results. I wish everyone the best, and thanks again for reading my post.

TeraGrammy
New Member


Date Joined May 2010
Total Posts : 1
   Posted 5/19/2010 1:26 AM (GMT -7)   

I am new to this forum, and am very interested to hear and learn more about reactive arthritis.

 

I have been living in East Africa for 10 years now as a medical missionary (I am a Registered Nurse). I am 61 years old. In late July 2009 I attended a week long conference in the city and ate at various places. By the end of the week I was feeling strange and that Saturday noticed I had a fever. I went to the doctor several times that week and nothing showed on any lab tests, but by Wednesday I ended up extremely ill with high fever, vomiting, uncontrollable diarrhea every 5-10 minutes. I was hospitalized for 5 days where tests finally showed I had severe malaria and gastroenteritis. I was put on IV quinine and antibiotics. I lost 19 lbs that week, and spent the following 2 weeks at home mostly in bed, getting my strength back slowly.

 

about 10 days after I was discharged, I began to have pain and swelling (pitting edema) in my right hand. I was initially treated for phlebitis, as my quinine IV had infiltrated in that hand the day before I was discharged. But after several different antibiotics and no improvement with my painful, swollen hand, I was referred to an older doctor in the clinic. I was feeling slightly unwell, and had also developed bladder pain, but showed no sign of urinary infection. This doctor told me that I had Reiter's Syndrome (reactive arthritis).

 

My hand showed joint swelling primarily in the 3 lateral knuckles and the 2nd joint of the pinky finger. I had considerable pain in the tendons to those knuckles as well as pain in the outer wrist joint.

 

Over the following 2 months my hand gradually returned to normal (although it’s still weaker than the other hand) with the use of NSAIDS and a topical menthol/analgesic/anti-inflammatory ointment. I also developed severe back pain in late September in the L4 region, where I knew I already had some degeneration, but previously had suffered no pain. Spinal manipulations helped that, and the pain left.

 

By December I was suffering considerable pain in my shoulder joints. It would move back and forth from left to right and back. My doctor said this was not RA because it was bilateral. X-rays showed no osteoarthritis other than appropriate changes for my age. But I became unable to sleep well due to pain by about March, and suffered decreased range of motion, with difficulty especially in dressing and bathing. In both December and April, I had incidences of “throwing my back out” with difficulty moving for several days. Those were cured by hot packs and rest.

 

In December I had begun taking a recommended monthly drug for osteoporosis and was told my shoulder pain was due to osteoporosis and would be alleviated by this drug. However, as I said above, it became worse, and I researched that drug and learned in rare instances it can cause severe bone/joint/muscle pain. So after 3 months of use, I stopped taking it.

 

Meantime, I am slowly improving my shoulder range of motion and decreasing pain by 3 interventions: 1) changing body mechanics with laptop computer use, 2) deliberately concentrating on relaxation of the shoulder muscles, and 3) using the same menthol-based ointment on the joints as I used on my hand. Prior to starting the ointment, I could not raise my arms higher than my shoulders; 2-3 days after starting it, I was able to raise my hands over my head. So there obviously was inflammation in those joints.

 

I am told that due to my age, it’s likely that these skeletal changes are due to aging factors. However, there is no history of arthritis in my family, and I didn’t have any of this joint pain and stiffness until after I had the food poisoning and RA. Medical care here in Africa lacks a lot; I’ve had no bone scans and few labs, and labs are limited at best. I have had the combination of malaria and gastroenteritis once since my hospital, I think in March, but was able to treat it myself at home, and had no flare-up of RA symptoms.

 

I notice from reading articles on RA that many people are very disabled with the arthritis. I have not had it that bad, but the ongoing joint pain disturbs me, and I’m wondering what are the chances that this is an ongoing form of RA?


dagmastr12
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/3/2010 8:07 AM (GMT -7)   
I've had RA about 25 years now and although I haven't had problems w/my GA system my joints have gone bad and I'm in chronic pain, it can get very hard to do almost anything someday's but I've found celebrex , volteran cream, lidoerm patches, anti depressants and pain killers all used together gives me some hours mid day that are pretty good but there are days like today that I'm just knocked out of the game. I will say it was worse in one way at first but then it went into remission but it started attacking weak points when I got to my 30's including my back and feet, knees. rest helps a lot too. But it can suck I hope it turns out better for you.

kg
New Member


Date Joined Jun 2010
Total Posts : 1
   Posted 6/12/2010 8:54 AM (GMT -7)   
I have not been diagnosed with RA as my pain is never on both sides of the body at the same time. I have been diagnoses with reactive arthritis, although it was based on symptoms and cause/effect rather than any blood work (I guess this is the only way??). After years of pain, stiffness and swelling I have been able to determine exactly what causes my problems. If I eat sugars, potatoes, noodles, or anything high in carbohydrates I will feel pain the next day, or in the middle of the night. I have gone on "binges" over the weekend, eating cookies, potatoes and lots of diet sodas and felt like someone with a hangover on Monday (not the vomiting, but the fatigue and general feeling bad) in addition to major pain in my knees, hips, shoulder, or even fingers.
 
We were on vacation a few years back and I ate everything I wasn't supposed to for a week. When we got back my right knee swelled up so big that I could not bend it, it was in terrible pain, and I had to get it drained. A month prior my left knee did the same thing but to a slightly lesser extent.
 
As long as I a "good" and don't eat the wong foods I do pretty well. I have found that if I get on my elliptical (no stress on the joints) I keep my joints pretty "lubricated".
 
Has anyone else had similar finding?

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 6/13/2010 12:45 PM (GMT -7)   
I abbreviate Reactive Arthritis to "ReA" so that it is differentiated from Rheumatoid.

This definitely does sound like a form of ReA. Those with other arthritic/auto-immune conditions are far more prone to developing ReA after an infection (particularly gastro or reproductive -- STDs are well known, but actually, staph infections and other pathogens infect the reproductive system causing ReA at least as often as STDs do).

The good news is that acute ReA doesn't have to develop into chronic ReA if it is treated aggressively with antibiotics and everything possible is done to support the immune system during that critical initial window.

The bad news is that exactly what should be done during that time period is not widely agreed upon. There are many theories, beginning with vitamin D-3 and other immune supporting supplements such as ALA, n-Acetyl-Cysteine (NAC), etc....

Good luck, keep us updated!
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 6/23/2010 8:48 AM (GMT -7)   
I had reactive arthritis from an adult onset of Fifth Disease, it was nasty. That was after I'd been diagnosed with Crohn's, but before any of my other Crohn's related arthritis and arthralgia started. Maybe I can blame all my joint pain on Fifth Disease contracted 6 years ago, but I doubt it. My SI, which has arthritic changes visible via MRI, has been problematic for 20 years, even before I knew I had Crohn's.

I don't know if the OP, Christian, is still reading this thread, but I feel awful that you are constrained to treating yourself because you have no insurance. Once the new federal insurance regulations are established this July, you should get yourself some coverage and see a GI. The Crohn's medicines can be expensive, but they can also make your life so much better. I'm still managing ok on the first line of treatment, 5-ASA's + PPI + vitamins, which all together cost me about $200/month.

highbury lewis
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/6/2010 2:35 PM (GMT -7)   
Hi
I am new to this forum. 5 years ago I had exceedingly bad food poisoning and I was so out of it and I was on so many drugs and just feeling sooo bad I thought I would die. - No idea how I got it, I am a vegetarian and I still don't know how or what exactly caused it. Then I got reactive arthritis. I had no idea what it was - my knees and ankles (mostly knees) were sooo painful and swollen. I could not walk properly for 6 months. Going from not walking at all - to a zimmer frame - to crutches. The medical profession did not provide any real help apart from antibiotics and painkillers. I just could not bear it and decided to go to accupuncture (never done this before or after) - I paid myself, and I am sure this helped this recovery. I could actually 'feel' my blood running around and the heat was unbelievable - sometimes getting worse before significantly better.

6 months later and I was A OK! and I haven't really had anything like that since that time 4 and 1/2 years ago. What I want to know is how likely is it that this will return? lately I am scared because I seem to be getting a bit of swelling and achey knees. My tummy is a bit upset.
I have made this a very potted history... I also had bad eyes and it was basically the worse time in my life. Very scary and I certainly don't want to ever go through that again.

Where do I look for information?
Thanks

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 8/6/2010 5:14 PM (GMT -7)   
Just thought I'd say hello. Unfortunately I know nothing about ReA, but its interesting that it seems to be linked with virus' or stomach upsets or other illnesses. RA or sero negative arthritis seems to be triggered by similar things.
There are a lot of new people posting here so its obviously touched a nerve for a lot of you.

Keep posting and introdcing yourselves on your own threads and there may be eough of you to find some answers together.

There is really good info on the HW diseases and conditions and resourses lists. Well worth a look.

Sorry I can't help but offer my sympathy, we all suffer from pain and joint problems here and can offer a good ear for moaning if nothing else.
regards, golitho

highbury lewis
New Member


Date Joined Aug 2010
Total Posts : 2
   Posted 8/7/2010 1:24 AM (GMT -7)   
Thanks golitho

I know there is a lot of people with similar pains... or rather, I do now that I have gone through it. It just seems that there is soo little information out there as to the sequence of possible events or possibilities in the future that its good to find out from others who have already been through similar. Surely this is not a 'new' thing - people have had stomach upsets and causes from the year dot?!? I can't understand why its fairly difficult to find info on the longevity etc. I am in the UK are you all in the US?

Regards and will keep checking.

Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 8/14/2010 9:40 PM (GMT -7)   
Highbury Lewis,

I have been looking all over the internet for the last few months and cannot find any good forums or support groups specifically for people with reactive arthritis. I like the Healing Well Rheumatoid Arthritis forum because they use some of the same drugs that might be used for people with reactive and offer some good advice, even if the course of their illness might be different.

I am seeing a rheumatologist and I get the sense that she cannot predict the outcome of this illness, despite the blood tests, MRI, X-rays, probing, etc. I have been to a podiatrist and a chiropractor and they acted like they had never had a case like mine before (I wasn't responding to their treatments)! That was before I was diagnosed by the specialist. There has been a lot of guessing as to how long I have had this illness. She thinks it has been years, not months. I have an important appointment with her in a couple of days. Maybe I will know more then! But I'm going to guess I won't know anything new.

I would like to update people that I seem to be doing a lot better on the methotrexate. I still have swelling, stiffness and fatigue, but not much pain. I will be seeing the results of my first follow-up lab test. Hope my liver is OK.
Reactive arthritis, diagnosed 2010. Hypertension. Taking Methotrexate, Norvasc. Former user of SSRIs and various mental health providers for anxiety, depression.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 8/19/2010 7:15 AM (GMT -7)   
Hi there,
 
Back in 2006, I was an early childhood teacher, and working with young children, I came down with a horrid stomach virus, it was to the point that I barely made the drive home. It went away, but two weeks later, while leaving work, I began to have pain in both of my knees (sharp, shooting pains) I thought it was from all of the bending, stooping etc, but it kept getting worse.  Finally I went in to see my gp, and he had no clue. I was tested for lyme, RA, lupus and some other things and all were normal. I was sent to a rheumy and he thought I had fifth disease, although I didn't have the "slapped cheek" look, and my blood work was normal. We waited for several months, thinking it would run it's course. I was never told I had ReA, although...it is now 2010 and I'm still going to the same rheumy. My joint pain didn't go away, and it progressed to my hips and hands. I've been on Plaquenil, Enbrel, Prednisone and MTX, after we tried every NSAID. 
 
Along the way, I've also been diagnosed with inflammation of the bladder (also seen in ReA) although my rheumy says he doesn't know why I would have inflammation there? I also have inflammation of the stomach lining as well as gastroparesis, and what looks like the beginnings of Chrohns.
 
In all of the years I've been seeing this rheumy, each time I leave with my sheet of paper, the diagnosis section reads polyinflammatory arthritis unspecified. Until the day I became ill with that stomach virus, I was healthy and fine. My oldest was in 7th grade the last time I was normal, healthy and pain free, he is now 18.
 
I understand your frustration of not knowing what is going on, I've never gotten an exact answer. All I have gotten is that what I do have is here to stay. I believe I had ReA and sometimes it turns into something more in a case like mine.

perrune
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/11/2010 2:10 PM (GMT -7)   
Hi,
I am 41 years old. I was diagnosed with a reaktive arthritis 6 years ago, started off with a salmonella and campylobacterial infection. In and out from emergency departments. Treated with predisolone and steroids injections. Recovered after 5 month. I have always been fit (special forces), was not used to be this weak. After 6 year received new infection, started after flued like symptoms (excuse me swedish spelling), Refered to specialist rheumatologist, now on 4 sulfasalazine 500mg x 2 x 2, and plaquenil 1x2 daily without any improvement. I have also received steroid injections when flare-ups. False feeling better for 3-4 days, and then back to "normal". Awaiting further treatment, I think metrotrexate. Any other with this symptoms? Also have had iritis every year. I would be glad if anyone with this symptoms could give me any
treatment sugestions or reveals.
Good speed,

Avonldy
New Member


Date Joined May 2010
Total Posts : 1
   Posted 9/13/2010 5:03 PM (GMT -7)   
To the original poster, or anyone with bad gastro problems. The best thing to do when you are having really bad gastro problems is to go on a low residue diet. That means no raw vegetables or fruit. Stick with soft, well cooked foods. Any kind of roughage or fiber can scratch the insides of your intestines and if you have any type of ulceration, can make it worse. It is really important to get medical aid. If you don't have insurance, go to a clinic or the ER. I have had ulcerative colitis for many years and I know that it can be fatal if not treated. That doesn't happen often, but I have known people who died of it. Do not waste your time trying over the counter herbal stuff. It won't help. There is NO cure, only control.
Donna
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