Hi Christian and welcome to HW and the RA forum
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
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.
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.
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?