as sick as ever

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Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 7/2/2010 10:36 PM (GMT -7)   
so around June 22 I started taking Sulfazine, and for about a week I thought maybe I was making progress.

But now I think I am having a reaction to the Sulfazine and on Friday I stopped taking it. I am itchy all over, and doggone it, I just didn't feel like calling the doctor and calling off work and all that. It's a holiday weekend, and I am just going to wait a few days (if things don't get worse) to talk to a doctor.

This is so frustrating. I tried to switch from Mobic to Etodolac, and turns out I was allergic/sensitive to Etodolac. The list of stuff I can't tolerate is growing.

At this point, I'm not even thinking that I hope I can get better. I just hope I can do something so I don't get worse. It feels like my ankles are broke when I get out of bed in the morning, and that is a very scary thing.

I just need to go back to the doctor, I guess, and try to get help. But it's so hard, when you have a setback like a drug reaction.

--MK
Reactive arthritis, diagnosed 2010. Taking Norvasc, Mobic for now. Plantar fasciitis sufferer since 2008. Former user of SSRIs and various mental health providers for anxiety, depression.


ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 7/3/2010 2:21 AM (GMT -7)   
Sounds to me like a fairly common allergy to sulfa drugs. Unfortunately, few drugs in this entire category (anti-inflammatory) are tolerated well by many people.

You may want to look into turmeric, particularly in combination with ginger and piperine (black pepper or its extract), which boosts absorption. Turmeric is amazing stuff and in my experience as well as many other folks, works at least as well as any pharmaceutical for fighting inflammation. It's also much better for your body, and has numerous fringe benefits not the last of which is an emerging body of evidence that it can prevent cancer and other serious health problems.
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.


Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 7/3/2010 9:00 AM (GMT -7)   
Exit wound.

i did buy a new jar of turmeric and when I remember i dump it on my food. at least it's tasty.
Reactive arthritis, diagnosed 2010. Taking Norvasc, Mobic for now. Plantar fasciitis sufferer since 2008. Former user of SSRIs and various mental health providers for anxiety, depression.


Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 7/8/2010 1:27 PM (GMT -7)   
Having severe back pain yesterday and today, not sure if it's a flareup. Called off work, this is way over the top. Going to start MTX, probably tomorrow.

Please don't tell me it's because I don't eat enough turmeric. I'm kind of P.O.'ed about that right now.
Reactive arthritis, diagnosed 2010. Taking Norvasc, Mobic for now. Plantar fasciitis sufferer since 2008. Former user of SSRIs and various mental health providers for anxiety, depression.


ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 7/10/2010 3:46 PM (GMT -7)   
I'm very sincerely sorry that I came across that way! That's the last thing I meant to suggest. I only meant that it's been a big help to me (I've found truly huge amounts are the best, particularly when combining some raw form in food, with extracts taken as supplements, and piperine/black pepper to make it more effective)....my phrasing came out wrong and the last thing I'd ever do is suggest that your problems are *because* you're not doing some thing that I'm preaching about. Just that I've found the more you take, the more it helps. It's almost impossible to take "too much" turmeric. I always mention it as the single most helpful thing I can think of when I hear of fellow sufferers in pain, that's all.

I'm sitting here really quite embarrassed that I came across that way and aggravated you at a time when you obviously didn't need that. Just trying to help in any way I can think of, because unfortunately there isn't a lot else that I can think of to suggest off of the top of my head.

I myself had an allergic reaction to sulfonamide antibiotics which made my condition much worse, so I definitely sympathize with what you've had to go through.
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.


Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 7/11/2010 8:16 PM (GMT -7)   
I over-reacted to your comments, ExitWound... well you know how people can sound in e-mail and stuff. Not the first time I did that. Sorry.
 
Over the weekend a friend told me "some guy" told her that cutting down on red meat and salt will do the trick (or whatever). Which of course irritated me because I am irritable. I won't even tell you what I told her that guy could do with his advice. I already cut down on red meat and salt because of my other medical condition, but that's not what I said when I got irritable. My comments are unprintable.
 
Interestingly, I did find some pain relief from a TENS unit... maybe I shouldn't go into detail on that one, there are some unorthodox aspects to it. But that thing was great.
 
I picked up my MTX and take my first weekly dose on Monday. I am so scared of it.
 
 
 
 
Reactive arthritis, diagnosed 2010. Taking Norvasc, Mobic for now. Plantar fasciitis sufferer since 2008. Former user of SSRIs and various mental health providers for anxiety, depression.


ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 7/16/2010 7:50 PM (GMT -7)   
I know all too well what you mean about the "advice" that people give. If I had a penny for every time somebody told me with total certainty that they knew what would "fix" me and it was some ridiculously obvious thing that either made no actual scientific sense....or was something that I'd tried years ago to no avail and am quite sure WON'T be of any use to me at all.

I keep trying to get a TENS unit provided to me, but for some reason it never happens. My life is just too swamped right now, particularly with my dual scope (colonoscopy/upper endoscopy, under full sedation) coming up in 10 days -- and I feel quite unprepared because I'll be going off my just-begun Ultra Low Dose Naltrexone regimen, and reducing my pain meds to be sure that they'll be able to safely give me a dose of anesthetic that will really keep me 100% unconscious through the whole thing....but I digress.

As for methotrexate....I also hear you there. When your condition was *started* by an infection or other immune-system shock, it's scary to put oneself at risk for some kind of new infection! Definitely a problem that is particularly bad for ReA sufferers.

Do let me/us know how it works for you though; I get pressure to try DMARD type "biologic" meds from some people/doctors, while others say it's a terrible idea and wouldn't prescribe them for me even if I wanted them! There's no consistency or depth of insight from either 'camp' and it's been driving me bonkers for years now.

Low Dose Naltrexone (LDN) or similar therapies (not to be confused with ULTRA Low Dose aka ULDN which is very different; you can take pain meds with ULDN but not LDN, for one thing) to "modulate" the immune system rather than just suppress it seem more promising to me, and I already take some medications like Cesamet which have immune-modulating properties, which I credit for my condition not going completely nuclear....but it will be months before I can see how ULDN works for me and consider moving up to the much higher (100-1,000X) LDN dosage regimen.

In any case, don't let the "I know what you need to be doing" types get to you....when you get the odd bit of useful advice, take it for what it's worth, and discard the rest without a second thought. Unfortunately, as ReA sufferers, we are on the cutting edge...in fact, we are the the BLEEDING edge. Few docs, no less random people, have the faintest clue what this condition is about and even sufferers of other arthritic conditions don't quite understand how uniquely bad it can be -- particularly when the slightest cold/flu or other minor infection can set off a severe flare-up as it does for many of us.

Keep us updated, and keep fighting the good fight!
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.


Daisysmom
Regular Member


Date Joined Sep 2006
Total Posts : 168
   Posted 7/22/2010 8:56 PM (GMT -7)   
Hello,

well, I first took the MTX about a week and a half ago, and I actually seem to be doing really well. Sometimes when I am walking or sitting I don't feel any pain at all. Overall the pain in my feet and back has lessened. I still get some stiffness.

So far no major bad reactions. I have noticed some changes as far as blood flow and digestive stuff, but nothing too awful. I have been trying to avoid drinking alcohol, falling out of windows or staying out in the sun in the middle of the day, etc.

I take 2 more doses and then I go to the doctor.
Reactive arthritis, diagnosed 2010. Taking Norvasc, Mobic for now. Plantar fasciitis sufferer since 2008. Former user of SSRIs and various mental health providers for anxiety, depression.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 7/23/2010 7:12 AM (GMT -7)   
Hi Daisysmom,
 
I didn't read other replies, so please forgive me if I'm repeating what others have already said.  Sulfasalazine is commonly implicated in drug allergy issues.  I took sulfasalazine for about 5-6 weeks.  Rheumy did not want to put me on it because so many people develop issues with it, but said I had to fail that drug before he could move me to the tnf inhibitors (which are quite a bit more expensive).  Within 5-6 weeks, I developed a high fever, a dangerously low platelet count, and a rash from head to toe.  Even inside my nose, ears, and mouth were inflamed.  The only thing that reversed the damage from the sulfasalazine was a stint with high dose prednisone for about a week.  I credit Prednisone for saving my life that time.  I had no idea, at the time, exactly how dangerous drug allergies are and how sick I actually was.    As a result, my doctor told me to NEVER take sulfa drugs again of any kind, even  though I had taken sulfa antibiotics all my life (for UTIs) with no problems.  He said anyone can develop a severe allergy to a drug at any point, even if it's the same drug they've been taking for years.
 
I would recommend that you not wait to see a doctor.  Knowing that SSz can cause severe drops in platelets, you want to be sure that the rash you have/had is not the petichiae caused by low blood counts.  Definitely do not take SSz again.
 
Hope you feel better soon.
 
El
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Lupus
Current Meds: Enbrel, Methotrexate, nexium, tramadol, nasonex, Nifedipine, Folic Acid, Tylenol PM

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