I'm a 20 year old female, my rheumy says I have palindromic rheumatism and we are just waiting for anything to show up on an X-ray, blood test etc. I have not had an X-ray or ultrasound done while the inflammation was present, my rheumy is convincing me to do so and will hopefully get results from that. Basically just waiting in pain and feeling hopeless like pain killers are my only option and this is the life I'll be living from now, I've been in pain everyday for over a year. Just wondering if there was any of you with RA who begun with palindromic rheumatism? And how long did it take for it to progress into being seropositive and destructive?
Edit: Have explored other causes, inflammation markers are evident but rheumatoid factor is negative. I'm going out of my mind thinking palindromic rheumatism is just not an acceptable diagnosis but I am not a specialist. I get swelling in my MCP, PIP joints as well as the wrist, ankle and arch of my feet. I have raynaurds phenomenon every morning. Familial autoimmunity is in my family and I have hidradenititis suppurativa which is thought to be autoimmune. I am the definition of flu, I am always catching things that my older sister and friends can avoid (the bad genes skipped my sister). I even caught the swine flu when no one around me had it, my immune systems failure is stronger then antibiotics and I usually get the bad end of infections. Throats infecion or tonsillitis turns into pneumonia, urine infection will cause a kidney infection, conjunctivitis isn't just funky itchy eyes, its reoccurring and viscous. I have been tested for all other autoimmune diseases. My GP is convinced I have seronegative RA, my rheumy is convinced I have PR. What is the difference?
Not sure how much more I can take, and bless you all x
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While you are waiting perhaps an idea to check other possible problems, that could be treated like thyroid function and estrogene-progesterone balance? Dietary modifications could also decrease inflammation. Leaving out gluten could have an effect for example. Just being passive in a negative situation can be very stressful and stress is not good. Hope you feel better soon. Simba
Thank you for the response Simba, I've been on hormone replacement therapy for 5 years to balance those (I also have endometriosis). I could certainly work on my diet though! Not eating enough due to always wanting to sleep which also affects my sleep further. What a cobweb I am in! X
Mine has always been palindromic in type - diagnosed 6-7 tears ago now . But I had + Rh factor from the start. My inflammatory markers (ESR etc) are never very high even when I've got, for e.g. a swollen, red hot, agonising, unusable wrist/hand. My consultant said that the palindromic type is more common these days , and that treatment is the same as 'classic' RA. My joints 'blow up' in a matter of hours when they flare, but that is rare now, though they grumble on occasionally if I test them too much. I'm on Methotrexate injections which seem to do the trick.
But take heart, except for the occasional bad flares I can get on with most daily life activities.
Hi janmary, I hope you are well. I have the same as you, except for the positive rheumatoid factor. Autoimmunity does run in my family (multiple sclerosis, psoriasis etc) so wondering if this could contribute to my development. I have been taking photos each time I have swelling in my joints or redness. Just wishing I could take a photo of the pain. Did you have any symptoms of RA before the positive blood work?
I was diagnosed 18 years ago with palindromic sero positive arthritis that took about 2/3 years to develop to full blown rheumatoid......in the palindromic stage I didn't have constant pain.......PA manifested with excruciating episodes that could last a few hours or a few days. I remember I would spend days in my PJ's because my arms were too painful to move to get changed.
I was diagnosed Privately by a Rheumatology Professor , as my GP dismissed my agonising symptoms by saying I should expect aches & pains at my age (50's)& refused to refer me to a consultant.
The Professor diagnosed me & referred me to a rheumatologist with a special interest in PA.......who treated me conservatively until the RA kicked in.....my GP was still saying as I was not in pain 24/7 it couldn't be RA!
Luckily I moved to a different area at that time & although I went back to see my Rheumy my new GP was much more sympathetic & was very supportive.
I was on about 4 Dmards over the years, plus steroid injection & I started a Biologic last year......which so far is very successful.
That said .....apart from high BP I have no other ongoing health issues....so I don't know how your other conditions will deal with PA or RA.
But I'd listen to my Rheumy over my GP any day!
Hope you get some relief soon, it's an anxious time for you.
On hindsight, I'd had painful feet and achy joints for a while, putting it down to overuse/bad shoes/flu.
Then had 'explosive' and agonising inflammation in one wrist and hand - zero to dramatic in a matter of minutes. I thought I'd broken it and couldn't work out how, then it got better but the other one started, then my feet....GP did blood tests and RH was positive and I was referred to cons quickly.
So I don't know if I had positive bloods before , I was too busy pretending nothing was wrong to go to the GP.
Do take photos, and keep a record of things you can't do when joints are inflamed . Pain is subjective, but disability is easier to explain perhaps?
I, too, have PR and it is horrible! Every few days a different joint and the pain is agony not just soreness most of the time. My consultant thinks I have RA as well (all blood tests +ve). It's generally treated in the same way as RA. You have my sincere sympathies because it is so unpredictable. Take care
A fellow PR sufferer! I'm very sorry to hear you are in the same pain as I am, it's just awful! I hope you have found some relief. I personally could live in a hot bath, thinking about taking up an excersize class at my local heated pool, sounds heavenly.
If you don't mind me asking, what are you being treated with? My biggest fear is that I will never have the positive blood tests and it will remain completely invisible. Sometimes I think my doctors must think I'm crazy with all my aching joints!
Thank you so much for responding. Hope your PR starts to treat you with kindness!
Hi. I completely understand about wanting positive bloods, not just so that it's clear to Drs but also for yourself. I have had positive results since the beginning but even with that I still convince myself that it's not real!! It's difficult especially as for the first few years I hardly had any swelling even with severe pain. I do get some redness and slight swelling now which I find oddly comforting!! Putting hands or whichever painful joint at the time, under warm water (even washing hands) is lovely but just as bad afterwards.
I take sulphasalazine and Methotrexate injections. I have loads more flares now than I did before starting the medication but I assume that is prigression of the illness. I certainly wouldn't say my condition is under control yet but I'm hopeful.
Thank you so much for sharing your experience with me. I'm sorry to hear about you getting more flares, I hope that it doesn't progress too much. As for the HS, I take doxycycline which is great for me, I can't take clarithromycin I get too many gastric side effects but doxy is great, my lesions clear up to almost just unnoticeable ingrown hair looking bumps and no new ones appear. Have been taking this antibiotic for 4 months now and my GP isn't worried about keeping me on it. Good luck with both conditions, I understand how difficult it can be! Xx
Me too! I've been confused all along and am only just realising that the pain pattern is very different in Palindromic. And the unpredictability is such a nuisance - joints blow up so suddenly and without warning, it makes you look like a fraud!
and the DAS doesn't make much sense either - it can be 1 on Monday and 10 on Tuesday.
Yes, I had palindromic RA for 10 years a before it became full blown RA. I was initially seronegative when it first started,but have become seropositive over the years and now have quite a high Rheumatoid factor.
During those first 10 years I'd have a bad flare once a year and needed an intramuscular steroid injection to help calm it. Between flares I was ok, but my feet were never normal and I had pain standing in bare feet.
I was put on Hydroxychloroquine at first, but came off that after 3 years due to a side effect. So for a long time I was on nothing and the Rheumatologist said I needed to have two bad flares a year before he'd consider putting me on Methotrexate. I now know this was wrong and I wish I'd pushed for treatment earlier.
Looking back I can see that things were slowly getting worse. I was stopping lots of activities because I felt so awful afterwards and it would cause a mini flare. My feet were never good and I could only wear trainers.
Your Rheumatologist's suggestion to look for inflammation on an ultrasound during a flare is a good one and might lead you to proper treatment. My problem was I could never get an appointment when I was in flare, so no one saw it, just me.
There are too many doctors in Rheumatoid clinics that concentrate only on your last blood test results. If you are in pain, there's inflammation. My ESR has only just been above normal Range even during the most horrendous flare, multiple joints swollen including big joints and feeling so ill I could hardly get out of bed. Many people are like this.
I'd recommend keeping a note of your symptoms so you can see how things are changing over time and can raise this at your appointments and get treatment before you get really bad, if that is the way your disease develops. I f you have swollen joints or swollen hands/feet take photos to show a trip your appointments. I look back at my notes now and can see things were getting worse but nothing was done. When I was finally diagnosed with full blown RA the consultant was flabbergasted that I'd been on no treatment for so long.The problem in waiting until you are really bad and in full blown RA is the DMARD drugs take 3 months to work fully and a lot of damage can be done in that time.
Sorry but my journey of 24 years has included both pal and RA.I did have relief for several years on a biologic currently I am off biological do have pal flares that seem to coin side with CHG in weather.I wish I could give you more hopeful news.
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