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analex
New Member


Date Joined Sep 2008
Total Posts : 15
   Posted 10/2/2008 7:37 AM (GMT -7)   
Hi Everyone
I am a 37 year old female. I am having a real hard time lately and I hope there are people out there that can give me advice and help. I will try to give as brief a summary as possible. Approx 2 years ago, I was diagnosed with Rheumatoid arthritis. I was having pain/inflammation in my fingers, hands and knees. My PCP did lots of blood work and my SED rate and RA antigen were both high. So, off to a rheumatologist I went. MY RA doc put me on prednisone to start, which really made a difference at first. I am Type 2 diabetic, so the pred. wreaked havoc on my blood sugars. After several visits, I was put on sulfasalazine as well as pred. and after several more visits I was put on methotrexate. So, I felt a big improvement with the methotrexate, so much so that I was able to taper down off the prednisone, which was a relief because it was making my blood sugars high all the time and I hated the mood swings, bloating, etc. I was almost off the prednisone when my liver enzymes started going thru the roof. So, I had to go off the methotrexate. My RA doc increased the prednisone to 30 mg daily and kept me on the sulfasalazine. The prednisone was helping, but the sulfa med never made any difference in my opinion. Anyway, a year and a half later and I'm still on the prednisone (40 mg daily) and sulfa. My RA was afraid to put me on any other RA med because I have a fatty liver and my immune system is bad on the prednisone, she didn't want to give me a med that would make my immune system worse. I was having constant infections. In and out of hospital with infections and complications due to the diabetes, for which I am now taking insulin. Anyway, this past summer, I finally got sick of my RA, felt she wasn't doing anything and felt that she didn't really know what to do with me. SO, I went to UCONN rheumatology. about 3 months ago I started there. They did a battery of tests, and when I sat down with them to discuss results, they told me that they felt I didn't have Rheumatoid Arthritis after all. That my RA antigen was normal. My SED rate was elevated, but all the other tests for lupus, lyme, etc. came back negative. They told me they felt I had "an inflammatory arthritis" but could not tell me which one or give me any kind of definitive answer that I needed. I was crushed. They also told me that I needed to come off prednisone as sooon as possible, as it was causing all kinds of horrible side effects and affecting my health. They tapered me off of it pretty quickly. Too quickly in my opinion, because now I am having constant nausea, loss of appetite, weight loss and dry, peeling skin since stopping the med. I am very upset, confused. I am having so much pain, in my fingers, my feet, my knees, my hands and I feel like I have no where to turn for help. I use Naproxen and narcotic pain med to help with pain, it helps somewhat, but not completely, and I don't want to constantly be taking pain med, since it makes me feel out of it. I am tempted to go on prednisone again, but I hated the med, and I do feel better and look better being off of it. If someone out there can give me some advice, I'm appreciate it. The docs at UCONN also  found thru my tests that I have Vitamin D deficiency and for that I am taking a once weekly dose of Vitamin D. Please, any help or advice would be MUCH appreciated....Anne

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/2/2008 2:13 PM (GMT -7)   
When you had the work-up at uconn, did they take any xrays of any of the effected/problematic joints? The thing about RA is that it causes joint destruction that can be seen on xray. Did your previous rheumy take xrays? Were those sent to uconn for comparison?

A negative RA factor and a normal SED rate also can exist in someone that has RA.

I have two types of inflammatory arthritis - inflammatory osteoarthritis and ankylosing spondylitis. Wish I could be of more help...
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


analex
New Member


Date Joined Sep 2008
Total Posts : 15
   Posted 10/2/2008 2:24 PM (GMT -7)   
yes, UCONN took all sorts of x-rays, even more so than my original rheumatoid MD. The x-rays were compared and showed no difference. According to UCONN, none of the x-rays showed damage to the joints. It's been very frustrating, because the pain and stiffness that I experience is very bad and disruptive to my life. It's not like I WANT rheumatoid arthritis, it's just that I know something is wrong and I want to know what it is. One of the docs at UCONN thought that my Vitamin D Deficiency could be causing all my symptoms. I have been taking weekly "megadose" of Vitamin D for 4 weeks now and no improvement. I have also been on Arava for 3 months, no improvement. At my appointment at UCONN in September, they gave me cortisone injections to both knees and it did NOTHING. My fingers especially become so stiff and swollen that sometimes I cannot bend them. I can't open bottles or jars, write with a pen or pencil, even typing bothers me. As for my knees, I can't kneel, and have much difficulty with stairs, I can't crouch either. My feet and ankles also bother me as well as my wrists and elbows. But the pain is daily, not really like a flare, although when it's going to rain, all of my joints hurt like hell. Two years ago, all of this started with my Left pointer finger and I was diagnosed with tendonitis, then it went into my R pointer finger, than other fingers, than Left knee, than R knee, than hands, feet, elbows, wrists. Before all of this I was working out in a gym daily, was healthy and had no health issues besides the type 2 diabetes that I kept in control with diet and excercise. I want my life back. I'm 37 and have 2 young kids. Sorry, just needed to vent... mad

retrn
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 10/2/2008 3:45 PM (GMT -7)   
I do have RA and dealing with it for a year and enduring alot of the same type of experiences as you-I feel for you especially as you are so young and have a young family. It sounds like UConn is being thorough but doesn't help with the "why" for all your pain if they have now ruled out the RA. They do say a definitive diagnosis is often hard to pin down. The Vitamin D deficiency sounds interesting would be nice if that was the answer. I have had alot of trouble with the various medications and have spoken to alot of people that have had alot of success with a vegan diet and that's where I'm headed next. They say raw vegan is even better- a big committment but hey if it works and allows us to cut down on these God awful meds it's worth it. Good luck to you and don't give up. New at this so don't know who the leading RA Drs. in the northeast are but if I hear will let you know. I am going to Brigham and Womens Hospital in Boston in a few weeks for a consutation if I am impressed will let you know. Take care and hang in there.

analex
New Member


Date Joined Sep 2008
Total Posts : 15
   Posted 10/2/2008 5:29 PM (GMT -7)   
:-)  Thank you so much for your kind words. I have thought alot about alternative medicine as the answer especially since this episode with UCONN. I know though, that I have to be patient with them and allow them to do thier work and try to brainstorm the issue. I don't go back until December to see them, and to me, that's alot of time to wait around with no answers. When you're in pain, as I'm sure you know, everyday is an eternity. The funny thing is that I was a vegetarian for the past 15 years. I just went back to eating meat this past March. I have diabetes (type 2) and my blood sugars have been horrid due to the prednisone. I almost died in March due to lactic acidosis and was hospitalized for 6 days. The doctors at that time felt that I shouldn't be on a vegetarian diet as I needed to have more protein options and less carbs. They also felt that my diet was restricted enough due to  low/no sugar that restricting it even more with vegeterian diet would cause me to feel too deprived. I do agree that for right now, it's better for me to have more protein options, since high protein diet controls your sugars better. My fiance's family is really into health and alternative medicine and health lifestyle and have sent me books and articles that they feel would be helpful and I am trying to get through them. I have been told to avoid "nightshade" vegetables as there is some theory that these make arthritis worse. Nightshade veggies being the mushroom family, eggplant, cabbage, beets and some others. Basically all the veggies that I like.I have found too, that my arthritis gets very bad when it's going to rain or snow and it feels like my whole body is being tortured. Does this happen with you? Are  you taking prednisone? My aunt on my mother's side has RA very bad and she has been taking methotrexate for years with great sucess. I wish I could have stayed on methotrexate because that worked so well for me. Right now, I might as well be on nothing, because nothing is helping. I hope your consultation goes well. Please let me know how it turns out for you.

coffeefiend
Regular Member


Date Joined Mar 2004
Total Posts : 139
   Posted 10/2/2008 7:00 PM (GMT -7)   
Hi Analex, your story sounds very familiar. I am 39, have some sort of spondylitis (HLA-B27+) and IBD, also allergies and asthma; about 4 years of joint pain in hands, ankles, wrists, feet, elbows and shoulders. My last rheumy took a long time to admit it was RA, then seemed hesitant. Prednisone helps and plaquenil did for a while. My new rheumy has now happily pronounced that I "don't have a serious inflammatory disease". I am seeing a new doc in two weeks.

SO...here is what I've learned...

*First off, I'm disturbed they gave you prednisone with diabetes. There are other drugs that would not have wreaked havoc.

*I've learned that some doctors seem to be very hesitant to diagnose and treat someone with multiple health issues. They seem to fear the overlap of the diseases. My best thought for you would be to find a very experienced doc who is not squeamish about "calling it".

*Damage not visible on x-rays will often show up on an MRI and maybe you could get one

*I also have the vitamin D deficiency and nope, the pills don't help

*I am negative for Rheumatoid factor and only elevated SED (29); have they checked your C-reactive protein?

My mom was a nurse and she always said the nurses knew which doctors were good and which were not. If you know a nurse, maybe she could steer you to a rheumy who can work with a complex case.

Best of luck, I feel for you, believe what you know to be true and don't give up. I don't believe it is right for them to send you away in such poor condition, especially something so serious.

Keep us all posted! Coffeefiend


retrn
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 10/2/2008 7:35 PM (GMT -7)   
yes I am on 10mg of Prednisone and have been for some time as I have had problems finding the right DMARD for me. That seems to be holding me for now and I hope if the arava starts to work to taper off the Prednisone. I do find that the damp weather does make things worse and people say the cold affects it. I find ice packs help me better than heat

analex
New Member


Date Joined Sep 2008
Total Posts : 15
   Posted 10/2/2008 10:47 PM (GMT -7)   
Hi Coffefiend
Yes, I agree with alot of the points you made. I have a wonderful and supportive mother and she has gone on most of my visits with me to see the different docs I have seen so that I have another set of ears and eyes in the room. The thing she mentioned to the docs at UCONN when they told us they "didn't think it was RA" was how disappointed we both were that I had seen a different Rheuamtiod MD for a year and a half before coming to them and this woman happily kept me on large doses of prednisone knowing full well what it was doing to my diabetes and my overall health. My mother was very angry about that as was I. She felt that if no one was sure what it was that I had, then why was I being treated so aggressively with such damaging meds? Which is my question, too. The UCONN docs were supposed to be my saving grace. I was so looking forward to going there because I had heard so many things that were good, and I felt that my old RA doc just didn't know what to do with me because of all my issues. It was almost like she was scared of me, in a way. I never left there feeling confident and it's shame on me that I let it go on so long. SO, when I got to the "mecca" of UCONN and felt that NOW I was going to get some answers only to be told "we're not sure what you have" and "see you in 3 months" it was a little like being in a looney toon cartoon, if you know what I mean. Then the doc, who is supposed to be one of the leading rheumatologists in the COUNTRY says to me "well, over 40% of these cases are never truly diagnosed" and then proceeds to leave the room and says "good luck" over his shoulder as the door is shutting. Well, that was about as much as my mother could stand and she chased him into the hall and says "good luck??" " what do you mean good luck" we came to you for help and you tell us "good lucK". She told him how I had suffered with infections and pain and diabetic issues and hospitalizations and everything and he said "well, that's all I can say for now. I can't stop being clinical about the situation just because your daughter has had a hard time, there are many people that have it hard". Which we are both aware of and was not the point my mother was trying to make. Let's just say the visit was very discouraging. I'm thinking of going to another RA doc, but it will be my third one and I'm loathe to go thru the process again, the tons of blood work, x-rays, explanations, etc. I will go to UCONN once more in Dec (my scheduled visit) if I don't like what they have to say then, I will try to find someone else. Sorry I babbled on for so long... turn Anne

analex
New Member


Date Joined Sep 2008
Total Posts : 15
   Posted 10/2/2008 10:56 PM (GMT -7)   
Hi Retrn
I have been on Arava for about 3 months and have had no sucess with it. Of course, none of my doctors told me that it takes 6-8 weeks before it kicks in. Would have been nice to know. I hope that this med works for you. I find, too that the cold works better for me than heat. I also use lidocaine patches and these also work for me to some degree when the pain is really bad. Rain and snow affect me terribly. It's hard living in the Northeast at this time of year. My aunt has RA very bad and she lived up here for years but now lives down in the Gulf of Mexico because the weather was too much for her. She offers to have me and my family move down and live with her, someday I may take her up on it, but I love the change of seasons too much right now and am willing to suffer through it. Do you work at all? I hope you don't mind me asking. I am not working at this time, there have been too many issues and hospitalizations. I'm hoping to start looking for part time work soon.

retrn
New Member


Date Joined Sep 2008
Total Posts : 16
   Posted 10/3/2008 7:28 AM (GMT -7)   
No I don't work at this time my husband and I are retired and are lucky enough to spend our winters in FL. I marvel at all of the people on this site that are not only dealing with the trials of RA but raising young families and holding down jobs-must be so hard some days to even pull it together.  I was a nurse for over 30 years and the medical world is truly a different world.  The practices are run like factories and time is money-very little time for niceties and most drs. don't like complicated cases they take up too much time or they worry about perhaps being sued!  I've had my trials and disappointments with Drs. and just keep plugging away and have not given up hope there is that one special someone that really cares.  I've always felt that word of mouth helps and may benefit from a Dr. that comes highly recommended-altho we all have different experiences.  I think teaching hospitals tend to be the place to go for difficult, unusual situations as they see it all and often collaborate with the rest of their staff for added input.  From what I do read an RA diagnosis is often not that straight forward and often it seems to be trial and error,unfortunately.  I know my Dr. was reluctant to treat until she felt she had a definitive diagnosis as these drugs are so toxic.  We are lucky we have the internet and these forums as there is a wealth of information out there.  Keep me posted on your next UCONN visit.

analex
New Member


Date Joined Sep 2008
Total Posts : 15
   Posted 10/3/2008 10:36 AM (GMT -7)   
Wow, that's great that you can go to Florida for the winter. I am a nurse, too. I feel so bad not being able to work right now because I truly love working with patients. I was a visiting nurse and it got to be too much, in and out of the car, carrying my laptop and nurse bag, kneeling and bending and wrapping wounds and climbing stairs. I loved the work I did, but it was too much for the pain I was having. Before I was a visiting nurse I worked in a doctor's office, which isn't as bad physically, so I'm trying to find a job in an office now. Healthcare has gotten so bad as far as how much time a doctor spends with you and how much attention they are paying when they are in the room. I just went to my PCP's office for a followup this week and the desk clerk told me I had an 11 cent balance that I needed to pay!!! I was shocked. 11 cents!!! Things are bad if they are scraping the bottom of the barrell. I know my case is complicated, and I also know it by heart, inside and out, so when I start explaining things and asking questions, I can sometimes feel the doctors just wishing I would shut up so they could get onto their next patient. The most often used line I've heard to date? "We'll talk about that next visit". Very frustrating. Anyway, I will keep you posted on my UCONN appt. :-)
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