I wonder if anybody either experienced or heard of something similar to what happened to me.
Back in November '19 I ended up in ER with the whole body systemic inflammation. Weeks before that I would experience little tightness across my lower back and behind my knees in the morning and after long sitting/driving. It would mostly go away during the day... Then it picked up a little, stifness was more noticable, especially behind the knees, my neck started hurting and my shoulders felt sore. I ended up seeing a doctor explaining all my symptoms. She ordered lyme test, CRP, ESR, bunch of other RA related antibody tests and full blood work. The next morning I woke up feeling completely stiff. I took a hot shower but that didnt help at all. I couldn't walk, when I sat I couldn;t get up, couldn't lift my hands above my head -- by 'couldn't' I mean if I did it caused extreme pain. So I went to ER. My blood work just came back and they were able to check it -- everything looked great!
They sent me home with prednisolone tapering pack. The next day it was almost all gone. I finished the pack and felt amazing.... then 2 weeks later all the symptoms came back! I took the tapering prednisolone again, and again it worked, then all came back again.... ended up seeing rheumatologist in December. He ordered prednisone 30 mg for a week and then taper down, so I was on prednisone for over a month and symptoms free after that. Anyhow, he thought it was a virus that caused a reaction and let's watch it.
Mid February -- My hip, which had mild osteorathiritis started being more painful. Then I started having ankle pain, apparently referred from "nobody knows". Pain turned into shooting pain, by mid April I couldn't walk. My Dr ordered all RA tests, Lyme and CRP/ESR -- all good. My CRP was 0.5. Pain kept getting worse and it was there all the time. Ended up getting MRI which showed severe arthritis, large jint effusion and synovitis ( among other things). A month later I finally agreed to cortisone shot, which did absolutely nothing. The fluid analysis showed there is inflammation (white cell count was almost 28K with 87% neutrophils, no aerobic organism was detected).
So, now 3 months later I've been back on prednisone that doesn't really work like magic anymore, and also on MTX. My rheumatologist is calling it an inflammatory arthritis that is agressive, destructive and erosive. I am working with a naturopath (functional medicine Dr) who thinks this is chronic Lyme.
I am still in pain, and still cannot walk. Most likely will need a new hip .... BTW I just turned 48, I am thin/athletic, always ate healthy, was never sick, picture of perfect health before all this.
Thank you for reading!
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Ro898
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Hi Charisma -- the anti-CCP test was negative, so was Sjogren, HLA-B27, ANA, RF, parvovirus, and all Lyme tests. They ran these at least 3 times since November 2019, last ones in July. Westernblot had reactive 23 band (IgM) but my dr. dismissed it as a false positive since everything else was nonreactive.
I only have pain in my hip and everything else is fine. I feel fine, I don't feel like I have any other symptoms associated with any diseases for that matter. Although, I do know things change and everyone is experiencing different symptoms over time. I guess that's why it's so damn hard to diagnose!
We obviously can’t diagnose or give medical advice, but your initial reaction to steroids and white blood cells do suggest inflammatory something-or-other.
If you were a previously healthy and fit 48 year old then the whole concept of something that can bring you to your knees so quickly is hard to accept. I was early 50’s are really struggled to believe I could go from normal to virtually bedridden in the space of 6 weeks. But uncontrolled inflammatory arthritis is EVIL. Totally and completely evil.
If you’ve been on MTX for a couple of months with no great improvement can you talk to your rheumatologist about fast tracking you to biologics if this is presentimg itself as aggressively destructive? Sometimes with these drugs the only thing you can do is try them as there is no test to determine which one might work.
We live in a very Lyme’y area and you don’t sound like any of the people I know with chronic Lyme...but that doesn’t mean anything as it is so variable.
Good luck, keep pushing and I hope you get some relief soon.
HI Helixhelix -- how did you ever come to terms with your diagnosis? I feel like it's just impossible to accept:(. I cannnot agree more -- it's is pure EVIL!
I actually live in CT not far from Lyme -- and did spend a lot of time in the woods. I've removed a few ticks -- they were never big so I thought I caught them early.
I've been on MTX for 6 weeks now and also taking prednisone and trying some herbal supplements. So far I feel the prednisone (another EVIL) is the only one working. I am scared of taking biologics -- it's a pandemic after all.
You’re 48, in good health, of normal weight, with no other things like diabetes, asthma or cardiovascular disease? So even with prednisone/biologics you hardly make it into the moderate risk category for covid. The only thing might be that you are higher up the queue for a vaccine...🙂 Focus on what is, not what might possibly be.
6 weeks of MTX is early doors....my magic week was week nine, when I made my bed in the morning and realised I could move my hands. So give it a bit more time perhaps.
Prednisone to me are the devil’s tic-tacs (do you know what tic-tacs are?). Make me go a bit mad, but in the first year I would happily sell my soul for them for pain relief. Thankfully I found my drug cocktail, so can now live pretty normally and largely pain free from the RA. I take both MTX and a biologic, and am being careful but still going out and about.
Have I come to terms with my diagnosis? Yes and no. I had to go through a grieving process for the old me, but I’m quite happy now with the new me. I am more patient, kind and thoughtful - but yes I still would like to be able to do things without factoring in the disease (I live normally as long as I stick to my regime, which means things like not staying up late so I get enough sleep). It’s about 10 years now, but I still have nightmares about the early years. And the big thing - which is probably pretty hard for you to believe right now - is that if you do have an inflammatory arthritis the treatments are generally pretty effective. So to me that’s better than Lyme where’ there’s pretty much nothing but holistic meds (and do check that what you take is ok with MTX, so supplements are contraindicated).
Keep hoping for a confirmed diagnosis..as that’ step 1,
LOL -- prednisone the devil's tic-tacs. I know what you mean! It's the only quick thing that works. I wish they could figure out how to get rid of all the nasty side effects and still keep the magic going.
Inflammatory arthritis is better than Lyme? Actually, probably is... I am only dealing with hip pain but I read many other horrid things that Lyme does to people and it's harder to get rid of. But I thought when treated properly and I could get rid of it then that's it, no more worries. Autoimmune disease sounds like it's for life, that scares me! My health insurance is through an employer. I am worried if I cannot get things under control I won't be able to work, lose my insurance and I need drugs to function.... and down the rabbit hole I go:(.
Thank you for sharing your story and all the positive encouragement, I sure as hell could use that now!
Hi sorry to hear you are suffering- I don’t know anything about Lyme but as of March this year I certainly know more about RA
Like you I was extremely fit and even walked in the Austrian alps in January this year but I had already begun to suffer morning stiffness soreness and tightness at back of knees etc and was under investigation
Diagnosed early March with RA and from then things developed rapidly and I couldn’t shower or dress myself and hardly walk, as helixhelix says uncontrolled RA is evil.
It has been a tough journey so far swapping meds etc but I now inject methotrexate and recently started a biologic and I am really beginning to see great improvement and would say I am 70% back to normal.
Due to the aggressive nature of my RA it has damaged my knee and i now need a TKR so after surgery hope to improve further
I hope you get the correct diagnosis and then you can move in the right direction.
I am so sorry about your diagnosis. When I read about the RA and causes it's seems so generic but genetic predisposition and environment seems to come up as a strongest contestants. Does it mean our immune system was weak and couldn't handle the environmental toxins? Why did we get sick and other 99% of population didn't?? I was totaly healthy before, maybe occasional cold once in a while...
I am determined to figure out why is this happening. I don't believe it's random, something had to triger it! My naturopath ordered tons of additional tests to get to the bottom of this.
Hope your TKR goes well. They are doing pretty good job these days with replacements since so many people are in need of them. Are you looking to get it soon?
I think that there is definitely an element of predisposition i was adopted so have no family history and some people think that a trauma can trigger it
I have led a healthy and active lifestyle and like yourself found difficult to accept and sometimes I realise I am not entirely there when I start to think about some of the things I miss doing
I agree with helixhelix that it is a grieving process that we have to go through before we can accept
I try to look on it as a fait accompli
and focus on what I can do and try not to be defined by this horrible disease. I also have hope that there will be so much more I am able to do as treatment gets things under control
Thanks for asking about TKR think it will be a while yet / COVID has had a massive impact on our wonderful NHS
So I am busy trying to keep up with physio exercises and walking as much as I can
I really hope you get the answers from medics you need and find some peace of mind
I made an appointment with a Lyme specialist -- it's in a 2 weeks. The only problem with digging deeper is these specialist tend not to take insurance and they can be pricey. However, I feel I need to know if it's Lyme or not.
Hope your son can get a proper treatment and that he feels better soon!
Are you in the US or UK? I only ask because I'm interested that you got Lyme tests automatically. I'm in England and when I raised the question of Lyme with two consultants they both just dismissed it. The first said it wouldn't be because I didn't have the circular rash, despite admitting that 1 in 3 don't get one. The second just said, "There is no Lyme disease in this country." That's despite there having been LD here for at least 30 years, an active Lyme Association and front-page stories about a well-known sportsman and a television actor getting LD in London.
I can't give you a diagnosis, but at least your doctors have considered a variety of possibilities. You may yet get relief from Methotrexate. It can take a few months to get working. It changed me from being unable to rise from a chair to being able to resume hiking. I wish you well.
In Connecticut US -- one of the worst tick infested areas.
So what were you diagnosed with? I read somewhere that chronic Lyme inflammation is also treated with MTX but how long it takes it's everyones guess. I don't believe it's working for me just yet. Does it happen slowly or one day you just realized it worked?
I was diagnosed with seronegative RA, but I had raised the question of Lyme because we do a lot of hiking and I had known about Lyme for 30 years, from taking groups of children out into the countryside. When the rheumatologist said there is none in the UK, I asked her why she was assuming we only hike in Britain. In fact, we do far more hiking in Europe and have often been in areas where there are huge notice-boards warning about the dangers from ticks. The consultant is extremely kind, but clearly has gaps in her knowledge.
Fortunately, I had already suggested the possibility of Lyme to my GP, who looked it up and gave me antibiotics for three weeks, so even if I did have Lyme, it might have cleared up by the time I got to the rheumatologist. Nevertheless, she should have been more knowledgeable.
I was taking prednisolone at the same time as MTX for quite a while (8 months, but about half of that was tapering off them), so it's hard to know exactly when the MTX started working. The dose of Pred was very low. I was in remission after 5 months on MTX, but I was still tapering off the Pred at the time. It took about 4 months to get to zero from only 5 mg. However, slow tapering is by far the best way. Now only take 10 mg MTX weekly.
Your “all body inflammation” symptoms sound much like mine from January 2015. I woke one day literally unable to lift my arms or walk; my shoulders/arms, hips, knees and feet were in agony. I have never experienced such horrible pain.
Ended up in rheumatology where I was tested immediately for Lyme (negative) and other possibilities. Was ultimately diagnosed with PMR — polymyalgia rheumatica. I was on steroids for almost 3 years to control it. PMR more or less eventually burnt out, and I was transitioned to a diagnosis of inflammatory RA.
After trying all the “cheap drugs” for RA, I was given Humira which worked wonders for about a year until it triggered pustular psoriasis on my hands and feet.
I was taken off Humira and put on Rinvoq (a fairly new biologic by the same drug manufacturer as Humira) and I am once again stable. Not perfect, but stable.
If you can be fast-tracked to a biologic, you might be able to eliminate the possibility of Lyme, because a biologic (as I understand it) would do nothing for those symptoms.
Hi Gracie -- initially I thought I had PMR -- all the symptoms were pointing to it but my dr, didn't even consider that possibility, especially after I was fine after the last month and a half course of prednisone.
I don't have any symptoms of Lyme, just inflammed angry hip joint. My understanding is that both DMARDs and biologics fight inflammation by stopping proinflammatory cytokines activation. Biologic like Humira specifically blocks TNF, and they both were used to treat Lyme arthritis inflammation. But I will do more research on biologics and Lyme. Thanks for pointing that out!
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