Has anyone else had post CMV reactive arthritis?

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I was diagnosed with cmv (cylo megla virus) back in October 2015 induced viral hepatitis which triggered reactive arthritis throughout my entire body a few months later I landed back in hospital (I have no recollection of going into hospital just waking up on a ward a week later and being told id just been transferred to them from intensive care) I had phylonaphritis and septic shock syndrome and of course I continued with reactive arthritis and fitege. I am on about 40 medications a day atm and I attend hydro therapy once a week to help with mobility and building muscle back up.

The thing is im 26 and before all of this I was ok I mean I had the occasional cold or migrane but never anything as serious as what ive had.. being told I almost died on a number of occasions and having no recollection of it but having what seems a never ending mix match if 'good' and 'bad' days never knowing which it'll be being constantly knackered all the time and being in constant pain and not being able to sleep like ever and having every side effect to every tablet im on is just really really really sucky and I just feel like I'm on my own. I just wondered if anyone else has had a similar experience or anyone has any tips they could give me to cope with all this change.

Sorry for rambling I hope to speak to you soon

Abbi smile

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5 Replies

  • Posted

    Wow, I am deeply sorry that all of this is happening to you at such a young age. It must be so difficult, I can't imagine trying to cope with everything and side effects as well. Unfortunately, all I have right now is the Reactive Arthritis from what I know and feel. As for side effects, I'm getting acne and a reddish face as well as had folliculitis in my scalp from the prednisone. I exfoliate with baking soda twice a week for face and use selsun blu for itchy scalp, seemed to take care of it all What are your side effects if I may know? I'll do my best to help with the arthritis lain
  • Posted

    Hi Abbi, you have been very unlucky indeed and i am amazed the medics sussed it all out.   What have they now said about your kidneys - are they now OK?  The general consensus between 50 and 80% of the population have CMV by age 40 but have no great cause for concern. However, in those with a weak immune system, it can cause hepatitis etc etc. Its realy important to boost immune system but i am sure they are already treating you for this stuff... if your immune system weakens, it can reactivate the virus in those who are susceptible.  Its also really important to get advice on pregnancy etc.   You seem quite knowledgeable about it all so it sounds like the doctors are on the case of treating you...

    ​Your combination of things is really quite unusual ... hepatitis induced arthritis is not that common and can spontaneously resolve but can remain prolonged in some patients... Hep antigens are normally present after 2 weeks & joint symptoms start within 12 weeks normally...

    ​how long have you had and are you under constant care now? How often are you going back etc? What have they said? I think i;d rely on the medics on these issues as very few people on this board will have this issue. It is well researched and of interest to the medics who have on-going research.  Presume given the Int Care Unit involvement you are under the care of a teaching hospital and their rheumatology dept. They may be able to put you in touch with others with these issues. Failing that contact Arthritis UK who may be able to as well as i think very few on this board would be able to understand first hand what you are going through.  It can resolve but it is fundamental to boost your immune system so the original virus does not reactivate.   I would think the medics have explained this and the drugs you are on are probably in part doing this.

    ​Where abouts in country are you and i will see if i can find a support group for you - am at a meeting tomorrow with some top Rheumatologists in UK and will ask how to go about this for you....

    ​Make sure you have asked your rheumy how to boost your immune system and ask to be referred to a dietician to give you all the help you can to eat the right stuff to do so.  One of the issues is that normally the medics will want to suppress the immune system to get rid of inflammation but they will hesitate to do so in this instance as normally it takes hold due to an already weakened imune system. Go back and say you are in pain and very worried and could someone spend a few minutes with you to explain all the ins the outs and come up with a plan for your overall health.  If its helpful i will ask tomorrow the questions you might ask.

    ​SOme do spontaneously resolve so in order to feel a bit more in control and to give yourself the best chance go for an immune boosting diet ASAP and start to write a list of questions you need to ask your rheumy.  Research it on John Hopkins website or Mayo Clinic web sites and dont hesitate to call Arthritis UK Register on the John Hopkins site and they will send you updates regularly on all types of arthritis - occasionally they share the latest stuf on what you have so this will give you a bit of hope... lots of research being done - but i would think best things are as above.

    I do understand why you feel alone in this - need to find you some other people in same boat and it is quite unusual. Dont give up yet - start to take control; make sure you understand it fully and make sure you are on optimal diet to boost immune system.   It does sound to me like the current med team are your best bet for a lot of answers as hepatitis induced arthritis varies from one person to next and is so serious i woudl not necessarily take much in from these boards. HOwever, in all cases linked to low immune system... so talk to the dietician at the hospital on whats best for you  - ignore mst diet advice on these boards as unless poeple are really in the know, most exclusion and 'healthy' diets might be contra-indicated given the drugs you will be on.  Ask the Rheumy to let you see dietician then at least you are working with them to try and build up your system again. Hope this is helpful Take care and try not to worry for the minute as some do resolve as the immune system builds back up. You have 2 underlying issues though - the rare reaction to the initial virus and the hepatitis. Thus best thing is to love your med team and ask them for more help in understanding it all.

  • Posted

    Abbi,,, one ther thing... you may find more help on the hepatitis board as you have hepatitis induced arthritis.. might be easier to find people who know what you are going through.
    • Posted

      Thanks sparkle1 I will have a look but my arthritis was triggered my the cmv virus my viral hepatitis and phylonaphritis was induced by the cmv as well as the arthritis. It's all a bit of a mess smile
    • Posted

      Hi, it still might spontaneously get better but I'd hate you take advice of this forum as a lot could be contraindicated as your immune system was/is compromised. Most people on the arthritis forums have the opposite issue so could be misleading to you.. Hopefully you have s great immunology team etc

      And dietician to boost your immune system. Hopefully you have good family and friends ...you seem to be in good medical care and you have a chance it may resolve so try and keep your mind on other stuff to not get depressed. I find the busier I am then the less it bothers me... Have taken up mandarin lessons as learning a language increased brain activity by 15%. Bit daft but takes my mind off it.

      I'd also contact Southampton (Chris Edwards)z he is working with Amsterdam on a thing which turns the vagus nerve on and off. The vagus nerve controls immune response to some degree so you could ask if it may help you at all.


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