missed the diagnosis?

[BeachsideVia]

Hi all! I am at a crossroads. I believe I am not properly diagnosed, will have to find a new Rheumatologist, and have other serious problems that need addressed. Thankfully I have a great Primary care doc, and have an appointment on Monday to see an integrative medicine doctor.

right now my health group lists chonedrocalcinosis, inflammatory polyarthritis. Over the past few years I have had “flare ups”. Swelling and pain of knees, ankles, shoulders, shoulder blades, neck,arms, wrists, clavicle. Sometimes after mild over use, often not. Usually just one area at a time, like L knee, L ankle, then will “travel” to another area sometimes (yes, I inherited my mother’s traveling pain!)over the last few years the flare ups increased, where i was getting them weekly.

i had a knee xray last year and it showed crystals in the joint. My pcp put me on mitigare but I had a reaction to it. Went to the rheumatologist who put me on MTX. 4 months later I am getting flares like before. Shoulder blade on fire, arm, shoulder, hand in pain, tried naproxin, no help. Saw Rheumy last week. Doc took me off MTX and wants me to start leflunomide. I have been doing research, neuropathy is a side effect and I already have neuropathy from BC chemo 9 years ago. PLUS my Rheumy is and has been rude and I am done with him.

I am thinking I have PMR. Whenever I was given prednisone , I felt just great. Every time! Even when I had the horrible Chemo, they gave me steroids and I would feel great for a day or two. I had a neck flare a few months ago and the urgent care doc put me on a dose pack and then on 5 mg prednisone. Took that for a while (felt great) and rheumy said to taper off. Started having flares again, all the while on MTX 17.5 mg!

I see a new integrative medicine doc tomorrow. I took 10 mg prednisone this morning, as I still have pain after 4 days. Will make appt with PCP who is positive about steroids.

this forum has helped me so much! I realize how complicated things can get. And I can continue living my life!

[CarolKate]

I have some similarities. Do you have any patches of possible psoriasis, however small? I have patches on my elbows, less than 2 cm.

[BeachsideVia in reply to CarolKate]

yes I do…. Above my wrist, size of a wuarter. It has been there a few years

[CarolKate in reply to BeachsideVia]

Ask your PCP or Rheumatologist about Psoriatic arthritis (PsA). I was misdiagnosed at first because the psoriasis was not noticeable but sometimes it's tiny or even absent. One thing about PsA is that it is usually not symmetrical and 'travels'. My wrist, foot, neck, elbow are the usual places and mainly on the left (but not always lol). everyone is different. Sometimes I can see one area swell up as I watch. At one stage (before medication) all my fingers were like sausages. I'm 74 too.

[BeachsideVia in reply to CarolKate]

are you on medication? What has helped you? I am on MTX 17.5 mg. There has been improvement. For me, “overuse” seems to be a culprit. I carried a heavy bag last week and got a flare in my shoulder blade, shoulder, arm and wrist. I am increasing my exercise and have to take it s l o w! I recently had a flare from doing chair yoga😱

[Gilliancheche]

It might still be an immune arthritis. I get flare ups in various joints. Perhaps the MTX needs to be increased or an alternative, or an additional medication added. Have you spoken to your rheumatology department? Is there an advice line you can try. It has taken quite a long time for me to get stability. Even so I have had occasional flares. I am sure with time you will get better control x

[BeachsideVia in reply to Gilliancheche]

my rheumy said to switch to Leflunomide, but after researching it I declined. I already have HBP and neuropathy from Chemo. So at the moment I will continue with the MTX and get a new rheumy. What has worked for you?

[Gilliancheche in reply to BeachsideVia]

I am taking MTX and COSENTYX. Was working quite well until recently. Taking celecoczib to try to combat a flare at the moment 🤞

[Gottarelax]

It's a difficult one. I was convinced I have PMR because 2 family members have it and have pretty similar symptoms. When I take a course of steroids I too feel great but as I am seropositive RA (anti-CCP) I am treated for RA. I'm on MTX (25mg) and sulphazalasine but probably only 50% better (and that was after a course of steroids gave me a boost to start). My rheumatologist is dismissive of PMR and says it's myalgic onset RA. Problem is I understand that if it is rheumatoid, steroids mask it and damage still occurs so I am sticking with the RA medication pathway.

[BeachsideVia in reply to Gottarelax]

it is complicated, I know. On top of it, I decided to switch Rheumatologists, and may have to leave the group. He took me off MTX and prescribed leflunamide, never said to increase MTX, which I would be ok with. I read about side effects, neuropathy, and I already have neuropathy from chemo! Don’t need to have more! He is dangerously dismissive so he is history. I need someone who can help me understand what is going on.

[Gottarelax in reply to BeachsideVia]

I hope your new appointment is helpful and that they listen to your concerns

[Freddiek in reply to Gottarelax]

My rheumatologist doesn't seem interested in my PMR type of pain. I am suffering with a lot of tendon type of pain in my fingers, shoulders and hips. She dismisses this as 'not RA'. I don't really mind what it's called but I do feel I need additional treatment to Tociluzumab. I am considering paying for a private consultation as I don't think I should be left in this much pain. I feel that my rheumatologist has decided that Tociluzumab is working for my RA so no further action is needed.

[BeachsideVia in reply to Freddiek]

good luck to you and hope you find someone who puts all the puzzle pieces together for you. It is tragic that some health care providers become disinterested. They think we are sheep with bad habits we will never change. When so many of us just want answers and direction to improve our lives.

[PSAWarrior28]

So sorry you are going through this. From what you've said, increasing methotrexate doesn't seem like an option. Perhaps do a little research to see what works best for your condition. I was on methotrexate until 9 weeks ago and my flare is beyond painful. I'm on pain meds to manage it until I see my rheumatologist.

Hopefully your new appointment will give you the answers you are seeking. Good luck 👍

[BeachsideVia in reply to PSAWarrior28]

did you stop MTX? What have you tried since then? Hope someone is there to figure this out for you.

[PSAWarrior28 in reply to BeachsideVia]

I was told to stop methotrexate as I developed a cough. In the interim, I've had sulphasalazine increased but I'm still in pain and not able to function. I've been told that I can have a steroid injection next week. Hopefully the pain will ease off.

[BeachsideVia in reply to PSAWarrior28]

these meds take weeks to get established. Fingers crossed!

[Nodule]

Hi there! I was diagnosed with RA last year and started on MTX, I did have to increase to 20 mg dose. Be careful with steroids, I am a physical therapist and can tell you, they will take away any kind of pain as they are a strong anti inflammatory, but have very bad long term consequences. If you had no side effects with the MTX, I would ask about increasing the dose, do you take another anti inflammatory as well? I also take Celebrex 2 x a day and the combination has me feeling very good! Hope this helps!

[BeachsideVia in reply to Nodule]

It seems I tolerate MTX, and for 2 months I had brief flares, nothing more than a day or so. Then recently have had pain from “ overuse” which would last days. I think my rheumy was too quick to take me off MTX. This recent flare under my shoulder blade may have been from carying a heavy bag from the car. I usually use a trolly. It was bad and spread to my shoulder and wrist. After 3 days started to improve. Sometimes I use naproxin, this time I took 10 mg prednisone. Today I took 5 and its almost resolved. Saw my new integrative doc and she said remain on current dose MTX, do not continue steroids, get all the bloodwork she ordered. That is what I will do right now. Increasing MTX will be a possibility. No leflunimide for me. I have used celebrex in the past, have some for as needed, but I am 74 and concerned about cardiac problems. Celebrex worked well for me. Will run this by all my new docs!

[Kaylee62]

Have they looked at Psoriatic arthritis? particularly if you have Psoriasis patches ? I was originally diagnosed as arthritis & Fibromyalgia and then changed to Psoriatic arthritis with possible fibromyalgia ... I take Sulfasalazine and was put on methotrexate but that upset my stomach so was changed to injections but my Liver didn't like that! I am now having biologic injections (Imraldi) not sure if it is helping! Good luck x

[BeachsideVia in reply to Kaylee62]

I will bring that up. Thanks!

[Djohnston1971]

Hi, I was on leflunomide for 6 weeks and it was controlling my symptoms, unfortunately one of the side effects is increased blood pressure. Mine increased to 156/103 so I had to stop. Now about to start on abatacept. Good luck with leflunomide, like I said it worked great for me, just unfortunate about BP.😄

[BeachsideVia in reply to Djohnston1971]

I have high blood pressure that has been difficult to manage, so I decided that risking this side effect is not worth it

[Nicky_C]

I am on leflunomide and monthly biological injection of golimumob for psioraric and osteo arthritis. It was working really well but now I have type 2 diabetes and take meds for that, it's not as good. I also have naproxen as a pain killer to take as and when. I manage a day but not without a lot of discomfort and pain by the end. Good luck with your appointment.

[BeachsideVia in reply to Nicky_C]

all these med trade offs are exhausting! I had pre diabetes for years and was on metformin. Last year I altered my diet, went off metformin, and my a1c is normal. But I feel like a ticking time bomb since whatever nee med I may take will alter theballance

[J1707-]

I have very similar problems. Now diagnosed with inflammatory arthritis after 6 years as my symptoms cross over . Spondolarthrits / PsA and RA often you need more invasive meds like biologics . Worth looking these up . Get as much evidence as you can. Good luck

[BeachsideVia in reply to J1707-]

I need to find a new rheumy. I have questions about biologics and JAK inhibitors beyond what is on the internet. I have MGUS that was discovered years ago. It has not gotten worse. Makes me vulnerable to Multiple Myeloma, and I read biologics increase that risk. Difficult trying to manage my pains with THAT hanging over my head!

[Niconn]

Hi! I dont have any knowledge of your particular condition(s) but I have grown to believe that Rheumatologists can often just be trying to give inflammation many different names rather than try tackle the causes, because its easier to medicate than investigate? I was diagnosed with psoriatic arthritis which is basically a non-symmetrical version of RA (sometimes seen with psoriasis, but not always) and was put on methotrexate for 6 months, and then spent yrs injecting various biologics with limited success. I stopped all meds, took anti-inflammatory supplements every day ( turmeric and spirulina) and avoided inflammatory foods ( dairy and red meat) and after 8 weeks my symptoms were completely gone. The only flare I have had in 3 yrs was once when I accidentally drank dairy and once when i was eating too many nuts ( incorrect balance of omega 3 to 6 is the leading cause of joint pain in Western countries) If your flares have increased in recent yrs try think what else are you doing more of now, inflammation can come from many sources, dyes, chemicals, pollution etc. I know steroids are a tempting quick fix, especially when you are in such pain, but in Europe all medical professionals are very very reluctant to prescribe steroids regularly for health reasons. It is thought of as just a sticking plaster rather than a long term solution. I wish you luck in becoming pain-free.

[BeachsideVia in reply to Niconn]

just yesterday I came up with a clue as to why I had a bad flare in my shoulder blade and arm. 2 weeks ago I had to stop my omega 3 and vit E supplements for a colonoscopy. Also bought skim milk to increase calcium as my recent dexa shows osteoporosis. I have restarted the omega 3 and vit e, and dumped the milk. I use flax mill and hemp milk. What is your opinion on what dairy to avoid? Some say yogurt is good. Whole milk or fat free?

Cheese, hard or soft. Cheese from swiss cows, sheep milk feta? Goat cheese? Ghee or butter? Im ready to toss it all! I eat some beef, always grass fed.

[Niconn in reply to BeachsideVia]

Hi, as the other reply states, I am lucky this works so well for me, also I am a scientist and maybe better fixed than most to try investigate and track my diet/habits to tie them to flares. My family have a history of allergies so i may just be particularly sensitive to dairy but I was basing my diet on a scientific publication on inflammatory sugars in red meat and dairy. When i avoided the foods listed i improved within 2 weeks. I eat chicken, turkey, fish and pulses, veg. I drink nut milks. No cheese! I'm v lucky that genetically I naturally have high blood calcium levels. If you have osteoporosis I'd be afraid to recommend giving up dairy, there are some questions over the safety of calcium supplements so its much better to get this from your diet. My rheumatologist felt yoghurts were the best source. I just felt with your recent progression there must be a reason you could maybe identify. Apparently we should all be eating twice as much Omega 3 as 6 and few manage it. That certainly caused my last flare too, I ran out of omega 3 tablets and was eating a lot of nuts. And every time I run out of turmeric&black pepper supplements the aches start creeping back within a week ( never fully as bad once my diet is ok)so that seems crucial. And it's good for everything!!! Best of luck

[helixhelix in reply to Niconn]

you are lucky that you respond so positively to diet changes. Not many people do sadly as it would be a much gentler approach!

[helixhelix]

“Whenever I was given prednisone , I felt just great. Every time! “

Most people do! It’s the Jekyll and Hyde drug. I have RA most definitely, which is pretty well controlled but even so pred makes me feel great!

[Doryza]

Hi! I have been diagnosed with rheumatoid arthritis for about 10 years; I tell you honestly and at the moment I suspect that I actually have something other than PR, as you also say, I had inflammation all over my body: knees, hips, collarbone, jaw, hands wrists, fingers, elbows) even several joints at once. Methotrexate, plaquenil, and humira had no effect. Sulfasalazine had an effect only for the hands, otherwise the inflammation was present, also for me cortisone (Medrol) was the only one that calmed my pain and inflammation, but I had to reduce the dose because of osteoporosis. Now I am on baricitinib and leflunomide I didn't see any effect from leflunomide, as long as I took it alone, but I say this from the point of view of pain, it still seems that it is needed clinically, anyway it didn't hurt me like others taken before it.. .Health, let's hear good!

[BeachsideVia in reply to Doryza]

it takes so much effort to understand our illnesses and try to improve symptoms, so when a doc seems disinterested, it can be discouraging. I saw an integrative medicine doc who will do lots of bloodwork and explore what is going on with me. I have dumped my rheumy and will at some point find a new one. I am reviewing my diet! And am increasing my activity and exercise s l o w l y!

[Doryza in reply to BeachsideVia]

How right you are!I wish you well!

[Blackknight1989]

You indicated red, swelling, “traveling” and most importantly mentioned crystals in you knee joint. There is only one type of arthritis that cause these crystals and that is gouty arthritis or gout. Generally caused by high Uric Acid levels which lead to the formation of Uric Acid Crystals that usually first manifest in the big toe or foot but can and do happen over any and all joints in the body. I’ve had CKD since 1996 (stage 4) kidney function at about 20% and have for many years. I had my first case of gout in 2002 (high Uric Acid is caused by severe Kidney Disease as well as other things but my longstanding CKD finally led to gout that was uncontrolled by 2004 where I was going to see urgent care doctors neatly once a week for 3 out of 4 weeks a month. In 2004 had a doc threaten to call security to force me into an ambulance if I didn’t go to the ER as he was sure it was osteomyelitis (disease like arthritis and swelling that can lead to sepsis) despite the fact I knew it was gout. He believed gout didn’t manifest in the knee so I spent 4 day in the hospital without any of the meds that would tear it as they cultured the fluid they drew off my knee for 72 hours. So often times it is misdiagnosed or simply missed. Many docs and specialists confuse it with RA as it manifests that way but is not persistent as a flare in one joint will eventually subside and then it will occur in another joint. The good news is it’s manageable. First start with diet eliminate shellfish and most fish in general, red meat vegetables such as asparagus and spinach, no organ or glandular meats not just from cows but all so no chicken livers (my wife’s favorite but ewwww), limit sugars and fats, eat complex carbs, and absolutely no alcohol. Gout was first called the Disease of Kings or just the King’s Disease as one of the first terrible sufferers of gout in recorded history was King Henry VIII. Only Royals and their courts were regular consumers of rich foods and red meats. All the above foods contain Purines and those raise Uric Acid immediately and while high Uric Acid is usually the cause of the first flare, after it happens ANY FLUCTUATION of Uric Acid will cause another flare so many doctors make another mistake when they prescribed meds like allopurinol, Uloric or the biologic you were first prescribed and the second they are recommending those lower Uric Acid (that’s the goal but not at the cost of 6 months worth of flares). In my case in 2006 I was referred to a god-send of a Rheumatologist who knew her stuff. By that time I had tophi (hard spherical deposits of crystals that are left subcutaneously in joints afflicted with many flares of gout) in my elbows, toes, fingers, ankles well you get it…her plan was to start me on 100 mg of allopurinol with .6 mg colchicine twice a week (a terrific anti-inflammatory much better than NSAIDS which are contraindicated with Kidney issues anyway but colchicine can be toxic if used too much thus the 2X a week) and 10mg prednisone daily as prophylaxis to counter the potential flares causing self by the Uric Acid lowering allopurinol while still lowering my Uric Acid. She gradually raised the dose to 300mg of allopurinol and continued the prophylaxis treatments of colchicine and prednisone for 6 months. Then I continued only the allopurinol and no more gout from 2006 until 2020. I had other issues myself then COVID hit and I had to close my small business of 30 years. I was totally disabled and had applied for Social Security Disability and VA Disability but those offices were closed. 18 months and 24 months later approved for both on first application (yes I am that afflicted…lol). But I had to drop private insurance and use VA referral community care which my former great doc doesn’t take. Thus after 14 years gout free now it’s back.

Plus, many Rheumatologist have adopted the use of biologics as cutting edge treatment for what they call “chronic gout” and only recommend the Uric Acid lowering drugs like allopurinol for “acute” gout. I believe that’s a money making scam personally with BigPharma (taking a page from Cardiologist and the Cholesterol Myth and the poison of statins like the cardiology practice guidelines recommended lowering “acceptable” total cholesterol from 200 to 150 and LDL levels from 100 to 70 with the development of non-genetic “high-intensity” statins rolled out by Pfizer, Merck, AstraZeneca, Novo-Nordisk etc) after all 3 of the top 10 highest grossing pharmaceutical drug sellers of the last 25 years are auto-immune treatments AbbVie‘s Humira, Amgen’s Enbrel and J&J’s Remicade numbers 2, 5 and 7 in largest grossing drugs. Thus the chronic versus acute gout split among some Rheumatologist‘s. In my opinion after moving away from private insurance to VA community care and firing 3 straight Rheumatologist who watched me have consecutive outbreaks as they tried to decide my best treatment biologics versus allopurinol (one would put money in their pocket allopurinol er…not do much) do I have “chronic versus acute”. Well I understand it’s both chronic and acute. Acute in the middle of a flare, chronic because until uric acid is lowered and controlled by meds like allopurinol not biologics as they have much worse side affects potentially (like statins) then the gout itself. Plus there is no scientific evidence or medical studies supporting this two category “classification” of gouty arthritis it’s a marketing strategy. Go try to find those classifications in PubMed, the Lancet or JAMA Rheumatology…you can’t they don’t exist. Finally the clinical practice guidelines for Rheumatology states specifically that us of a Uric Acid lowering medication with colchicine and prednisone as prophylaxis for a 6 month period is best practice to treat all gout especially with several flares as you describe. If desired I can provide links for all assertions here so ask if wanted or needed. I believe you are spot on to fire your current doc meantime ask you primary to check Urology c Acid levels, clean up your diet, X-Ray other joints to look for crystals and if it flares ask for a 5day methylphenidate pack or prednisone because a couple days on either fixed me right up…for me best treatment for the flare but must cure the underlying cause to prevent any more flares, steroids are dangerous in extended use as are NSAIDS (think Vioxx) and colchicine can be toxic so you can’t just manage the flares with those…on the Homeopathic side, some proof Vitamin C helps, along with moderate coffee (fully loaded…lol) drinking and cherry juice or cherry consumption. I found none of those helped me but may help you. Finally (really this time) I am not a doctor nor in the medical field, I related my own experiences with gout as well as my opinions as to why the biologics and potential missed or overlooked diagnosis, we do not diagnose nor recommend treatments, only hope help. My best to you!

[BeachsideVia in reply to Blackknight1989]

Thank you for your reply! So…. My research has led me to believe I have pseudo gout, or CPPD. I also came upon many articles on Phosphocitrate, which inhibits crystal formation. Look it up! I have been combing the internet for a source and I cannot find ONE! I see my rheumy next week and will 1) demand he provide me with a source of Phosphocitrate and 2) demand he do all tests necessary to properly diagnose my problem. They have X rays that show the crystal formation on my knee. All of last year I had many flares in my knees, ankles, shoulders. I went on methotrexate injections for 6 months, no real help so I stopped a month ago. Stomach pain, hair falling out. I have stopped gluten and all dairy. So far no flares. This was during reclast shot last year, all the covid shots, and 5 years of prolia before that! (Also major chemo and radiation 9 years ago for BC! I have OA in one hip that I am working on strengthening but I have pain. Waiting to get pre auth for low dose butrans patch which my new pain doc says will help.

I must find out what kind of crystals are forming and why.