Questions about Reiter's

[reiterskid]

Hello there,

I am 24 years old male I was recently diagnosed with Reiter's Syndrome (Reactive Arthritis). I am positive for HLA-B27 antigen. It's been almost one month since the first swelling and before that I had Chlamydia. My symptoms so far are swelling in knees, elbow, ankles, toes, wrist, fingers, and I think in my spine too, and of course, pain and stiffness. I didn't have any other problem from the list of problems that come with Reiter's. The doctors put me on NSAIDs and they gave me cortisone shots in my knees and my elbow to bring down the swelling and it worked. They tried cortisone with my finger but it didn't work. The NSAIDs are not working either, except as pain reliefs. I thought of alternative medicine and I started taking homeopathic remedies but they didn't work either.

My questions are:

1. The doctor was encouraging me to start taking Enbrel, but I'm too scared because of its side effects and because of the risk of getting Multiple Sclerosis. How risky is it? Is it really the only solution I have right now?

2. One of the doctors told me that the symptoms will go away on their own within 2 to 6 months. Shall I just wait this period and suffer through the pain to avoid taking the Enbrel? Although I really need to get back to normal soon because I have studies and work.

3. Will it get worse, better, or stay as it is while I'm waiting for the symptoms to go away?

4. Will I get such symptoms again in the future, if I'm on or off medications? How bad will it be? Is the antigen I have a factor in having Reiter's chronically?

I will appreciate it if anyone can answer any of my questions. Thanks in advance.

[mranxietyoftheeast]

Thanks.  Did I mention that I participated in clinical trial (dual antibiotics -- Rifampin and Doxycycline for one year).    It did not help me...though I've heard it has helped others.

Let me know what you think of the Enbrel.   The doc who ran the clinical study suggested I try one of the three TNFs -- Enbrel, Humira or Remicade.     I still haven't.

Take care.

[reiterskid]

So I finally decided to go with Enbrel. I stopped the homeopathic remedy and took my shot of Enbrel last Tuesday. I also started taking pain medication regularly and my rheumatologist gave me cortisone shot in my ankle, which was the most recent and the most painful swelling. I feel a bit better now with the combination of those things. I don't know if Enbrel started taking effect or not yet. I'm just trying to be more positive about it. I also hear what you're saying, mranxietyoftheeast. I have the same fears about my future and my career and studies, which both need a lot of physical activities. It's unfortunate that they don't have enough knowledge about these diseases, but let's hope for the best. My friend just sent me this article about a research in the UK for a cure for RA, I thought you'd be interested in it:

http://www.telegraph.co.uk/news/newstopics/politics/health/2553000/One-injection-vaccine-cure-for-arthritis-within-five-years.html

[mranxietyoftheeast]

Do you know what triggered your condition?

I travel a lot w/ my job and I'm often in front of clients, etc.     Will I get sick from these injections?    Will I be able to do my job / travel / sell / present?    My skills are slowly slipping away.     I worry I'll be forced to resign and either by my own little business, take a less demanding job or file for disability.    I'm in my 40s w/ two young kids and my wife doesn't work.     I really can't let them down.

[txsilver]

Hi and welcome.  I am HLA B27 negative too but have AS which is another of the spondys.  I have heard of the antibiotic treatment but have not personally communicated with anyone for whom it worked.
I can appreciate your reticence about the stronger drugs.  Most of us feel that way at one time or another.  Personally, I prefer the methotrexate injections to the pills.  They are easier on your body and have fewer side effects.  It can be daunting to give yourself an injection once per week, but it is worth the leap of faith if you are going to take MTX.  Also, when on MTX you should also take folic acid.  The Dr should prescribe it for you.  It will help reduce the side effects and keep your folic acid levels correct since MTX can affect that.
I have heard from only a small number of people who got relief from MTX quickly.  The vast majority seem to find some relief between the 3rd and 4th month of taking it and improve from there.  It seems all the drugs take time to build up in our systems to have the desired affect.  That is why it can take so long to find a treatment that works.  
While I am not personally on Enbrel (yet), it is my understanding from speaking to others who do take it that it works in much the same way.  
I would suggest you research both MTX and Enbrel.  Sometimes doctors want to use them in combination.  I would also strongly recommend you consider the injections of MTX rather than the pills.  The pills made me feel worse because of the number of side effects I experienced.  Which reminds me, if you suffer with side effects even while taking folic acid, ask your doctor about Leucovorin which is taken exactly 24 hours after the MTX injection and reduced the side effects completely for me until I built up a tolerance to the MTX.

[mranxietyoftheeast]

I have Reiters and it first presented as a UTI.   Despite all kinds of tests (blood, urine, xrays, body scans, etc) and visits to almost every hospital in America (including Hopkins, Cornell, Mass Gen) no doctor could pin point the cause of my pain and symptoms.     I had always suspected Chlamydia.. but it was never proven.   I am HLA B27 negative.... I have even  tried an experimental approach to curing this condition (dual antibiotics for a year).    Nothing helped.   No one believed me or understood my pain.

I too have been offered Methotrexate.  I filled my prescription but never took the pills because I was afraid of the side effects.    I've been reading more and more about Enbrel and may consider using myself.     I understand it either works or does not work rather quickly two to three monhs.  

Please let me know more about Methotrexate and Enbrel.

Thx.

[txsilver]

I completely understand where you are coming from.  I tried accupuncture, muscle release therapy, supplements, saw an iridologist/herbalist and have to say I did get some relief but nothing that made me able to function.  I still do use alternative therapies as I believe that the side effects of the drugs I take are helped by them so I guess you could call mine a blended approach.  
Please keep us posted on how you are doing, which therapies you try and the results you get.  Really pulling for you to beat this thing and never have a relapse!

[reiterskid]

thanks for the support, txsilver. that's exactly how I'm feeling right now, that I just want to get my life back, but I'm hesitating to take the leap of faith because it should go away eventually. I also forgot to mention that my friends convinced me to give alternative medicine a chance. did either of you try it before? I think I'll give it a chance till next week, and if I don't see any improvement at all, then I'll go with enbrel.

[txsilver]

I am not currently taking Enbrel but may have it added to my regime in 6 weeks.  Right now I am on omniprazole (stomach protection), Naproxen, Plaquenil and Methotrexate.  (I have RA and AS.)  Most of the drugs they give us take approximately 3 months to assess their affects.  It is a very frustrating process, but it takes that long for the medicine to build up in your system and have an impact.  I would be surprised if Enbrel helped you so quickly but I would love to hear that it did!
What I can tell you is that while I was trying to get a treatment that worked and trying all the alternative therapies, I too was mostly in bed.  I was afraid to start the methotrexate because of the potential side effects of that rx, but decided I was desperate enough to get my life back that I was willing to take the leap of faith.  That was almost 6 months ago and I know it was the right decision for me because it restored my quality of life.
Smittygirl is the expert in this area but we are all here for you as you work through the decisions you have to make and the treatment plan you settle on.  I hope you are among those who fully recover from ReA and never go through it again.

[reiterskid]

Thank you both for your words of help and support. I've been spending most of my days in bed, so I also made some research about it. I'm glad you understand my hesitation and it's comforting to hear that other took enbrel and started feeling better instead of getting other problems. Yes, txsilver, I realized that I'm taking one NSAID and one DMARD, and also a third drug to protect my stomach. I don't think those are working. Smittygirl, thank you. I've read your responses to other posts and they were helpful too. Did either of you suffer from any serious infection while taking the enbrel? If so, how bad was it? Did you have to stop enbrel for a while? Also, I'm a bit confused about what you said, Smittygirl, because my doctor said that I should start feeling better in a few days after starting taking enbrel. It took you three months to see any improvement. Is it because you waited longer or maybe your case was more severe?

Thank you again for everything.

[smittygirl]

I do not fit the profile for ReA, got it at 46 from a UTI and that was 4 years ago.  Swelling in my feet, knees, hands, pain and stiffness in every joint in my body. Was in a wheelchair for 4 months because I couldn't walk.  I tried every drug there was and nothing worked for me.  I also developed Ankoylosing Spondylitis as I too am HLA-B27 positive.  I was a runner/triathlete before all this happened.  I started taking Enbrel about 4 months ago, it took about 3 months to begin working.  I had 0 quality of life before I started taking this drug, you have to weigh the risk/benefit factor.   In 2 of 3 people the arthritis can become chronic as in my case and should you get re-infected from an STD your symptoms can recur.   Every single medication comes with some very scary risks,I know exactly what you are going through and tried every natural cure I read about, my disease was too severe for any of them to work.   The Enbrel has helped me tremendously, I did not want to take it either at first and it took about a year for me to realize I was getting worse and life was passing me by, I missed out on too many things because I was always in too much pain and too tired/fatigued to have a life.   Only you can decide, but you are too young to be missing out on life.  Please stay in touch with me, unless someone has gone thru ReA it is hard to truly understand the pain and mental toll it takes on us.  Welcome to the forum.

Sue
Smittygirl

[txsilver]

Glad you found us!  It is scary when you first get diagnosed but you are not alone.  I will do my best to answer your questions.

1. The doctor was encouraging me to start taking Enbrel, but I'm too scared because of its side effects and because of the risk of getting Multiple Sclerosis. How risky is it? Is it really the only solution I have right now?

My research on the web indicates that new cases of MS in patients on Enbrel are rare.  All medicines come with potential side effects and some are worse than others.  Doctors prescribe these drugs because they feel the benefits outweigh the risks.  There are alternatives to Enbrel, but they come with potential side effects, too.  Many people take this drug and experience a such a vast improvement in their symptoms that they cannot imagine being without it.

2. One of the doctors told me that the symptoms will go away on their own within 2 to 6 months. Shall I just wait this period and suffer through the pain to avoid taking the Enbrel? Although I really need to get back to normal soon because I have studies and work.

According to the Spondylitis Association of America (ReA is one of the Spondylotharapies), ReA usually clears in 3-12 months but, if you are HLA-B27 positive it can be more severe and last longer.  I would not encourage you to avoid treatment.  If you are dead-set against taking enbrel, talk to your doctor about alternatives.

3. Will it get worse, better, or stay as it is while I'm waiting for the symptoms to go away?

Unfortunately, there is no way to know.  Of the people I have talked to, most indicated they got worse until they got treatment.

4. Will I get such symptoms again in the future, if I'm on or off medications? How bad will it be? Is the antigen I have a factor in having Reiter's chronically?

ReA can recur.  According to SAA, 15-20% of patients with ReA develop the chronic form of it.

I hope this information helps.  I encourage you to accept treatment.  I know how hard it is to try to function through the pain and fatigue that these conditions bring.    If NSAIDs do not give you sufficient relief and you will not consider a TNF like Enbrel, talk to your doctor about DMARDs.  They all have their rare side effects but your doctor can help you weigh the benefits and risks.
Good luck and please keep in touch so we know how you are doing and can help you through which ever approach you choose to take.