Disgusted

So I had my rheumatologist appointment today. She totally changed her tune. I went in and showed her my labs from the ER that show high crp of 27 and low wbc. She said she still doesn't think I have lupus because of the negative ana. I told her it was positive before and negative when she tested. She turned everything around. So I asked her what is wrong with me. She said you probably have fibromyalgia on top of another autoimmune but what she doesn't know. I said ok what do I do with all this inflammation in my body. She said to finish up the prednisone and then to take myloxicam. I said I was on it before and it did nothing for me. She said take it and see. Come back in 4-6 weeks. Ok.....then what? I'm giving up. I can't take feeling like this. Oh and before she left she said not to worry about "labelling" what I have and it may take many years before I get a diagnosis. I'm so disheartened.

32 Replies

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  • Sorry to hear. I think docs sometimes cannot figure things out so they say things like that. They are frustrated just as you are. Diseases sometimes don't fit in into any diagnosis or syndrome they learned in med school. Autoimmune problems are hard to diagnose since everyone is unique. At first I was diagnosed with undifferentiated connective tissue disease then it turned into "lupus" with Sjogren's. Last visit I was supposedly in remission. Really ??? Am in so much pain sometimes. I wish you the best. Be patient.

  • I am the same my GP & Rheumatoid Specialist both name it "Lillys Autoimmune Disease"

    Try explaining that to people x

  • Infortunately in my experience, some departments seem to want to clear their books and in one department i was told I was in remission, I didn't have lupus anymore- so I left and applied to join my more local department where on the first blood test it proved positive for lupus. Some departments are told to cut back and so I would say my lupus is mild and i got the chop.

    Thats my experience..

  • your lupus can be in remission but it cannot be cured - I would have challenged them to show you studies whereby it has been witnessed that lupus has been "cured"

  • Sorry! I love that idea.....Lilly's autoimmune disease 😀 I'm supposed to have quite a few that overlap and often forget some of them.......so I'm thinking I may have chris' auto immune disease! X

  • Yes I have several that's why they nicknamed it!

    Not good when you fill out pip reports though lol 😁

  • My disease has now officially been named after me. I have 9 people walking around ( as best they can ), with my disease. It incorporates Lupus and at least 25 other syndromes. Sometimes there just isn't a name for one. I have a specific element in my lower epidermis that had never been seen before anywhere, so that's how mine could be named after me. I'd rather a bag or a flower could be named after me, just my luck it's an illness. Grrrrr. 🤒

  • One more thing, it makes it so much easier to have a name for this disease as I don't have to go through hundreds of symptoms and be looked at as though I'm mad. As I was a case study at The Royal Society of Medicine, it means that I'm now believed. Xx

  • I think our need for a label to attach to our symptoms is more powerful than many specialists can really grasp. To me the important thing is to be believed and your rheumy does believe that you have an autoimmune disease at least. You certainly wouldn't have a high CRP like that with Fibro alone unless you also had a severe infection when it was taken.

    So I think you may be being too badly affected by pain to see the wood for the trees? Your rheumy isn't saying you don't have active autoimmune/ connective tissue disease - just that they aren't rushing into a diagnosis and treatment just yet because they need to see where it goes.

    For instance RA can be seronegative for 30% of sufferers and this could cause a high CRP like yours. And Sjogrens can cause terrible pain and be seronegative in up to 50% of sufferers. So it may take years but that doesn't mean she won't offer you further treatment or isn't taking you seriously. With a CRP that elevated she almost certainly is - and if not you must try for a second opinion.

    The medications are pretty much the same for all types of connective tissue disease and Lupus is just one of about six main rheumatic diseases; RA, Sjogrens, Lupus, Vasculitis, Scleroderma and Polymyositis and MCTD - also UCTD - which is a mix of several not full blown.

    Primary Sjogrens often presents with very high inflammatory markers because of the lack of moisture in the blood so this could be a contender for you perhaps. Please don't be disheartened. See what happens in 4-6 weeks - this would be no time at all in rheumatology in the U.K.!

  • fantastic reply as always/

  • It is difficult. It took 40 years for them to diagnose me. Being labeled didn't bother me too much but being told I wasn't mad or a hyperchondriac meant a lot to me

    Even since I have found it difficult. I have a lovely coagulation team that have left blood tests to me. I have them every two/three weeks and every week if necessary. Reason my consultant has stated for the last three years my inr should be 3.5/4. This I can function with. He has consistently told my gps 2.5/3. This I can't function with. My gps wrote to him and he stated though he told me 3.5/4 he made a mistake and would have to grumble on

    I'm not a doctor so firstly was somewhat annoyed when he had stated I grumble (this incidentally refers to the type of illness and not me personally ~ did any of us know that. Of course not consultant language) and secondly he cannot tell me one thing and the gps another

    Result I Jill get have a consultant as he was upset I hadn't contacted him to talk about it. Ever tried to contact your consultant to discuss it. Impossible

    With my gp I am keeping not good but coping

    I've found that each day I must laugh at myself and push myself a little more each day

    Consultants we need them but they do make mistakes but hey they know we have a condition and try their best

    Keep smiling and try not to let it get you down

    Ps I've lupus and aps

    Regards diane

  • Healthunlocked covers many different health conditions. What i find profound is when you start looking at the individual ones how many are autoiummune in nature. The whole area is huge. I really believe the time has come to have autoimmuint constultants as a new department in its own right. Budgets would mean this is not going to be realistic but might make diagnosis easier fro those who struggle. x

  • Yes! I agree. I doubt it will happen but perhaps as the next generations of doctors start practising with more open minds . . . . . .???

  • What was her basis for saying fibro? If it was the high CRP she needs to brush up her reading - fibro is characterised by a NORMAL CRP - it is a sign of inflammation and fibro is NOT due to inflammation. You may have a fibro-like set of symptoms but it ain't fibro...

  • I agree but to my umderstanding its possible to habe fibro and other auto immume disorders at one time

  • It is - I wasn't saying it isn't. What I said was that if the symptoms are relieved by pred - it isn't fibro, it is something else with similar symptoms. Pred does NOT work for fibro.

  • I understand your frustration. I have Sjogrens plus a bit of this and a bit of that ( other AI diseases). I take Hydroxychloroqine,Mycophenolate and Amitriptyline for the peripheral neuropathy. I think these are given for a lot of AI diseases. I wish I had a name for all this that other people could understand ! Keep your chin up !

  • You DO have a name Bones Bones - Sjogrens Disease!!!

    If people don't understand this then we need to educate them about it as sufferers. But saying "I have Sjogrens plus but wish I had a name.." implies Sjogrens can't affect the entire body and isn't as potentially devastating as it undoubtedly is! X

  • Thank you all for your love and support!!!! It truly makes me feel like I am not alone in this battle. First, isn't having constant high CRP NOT good for your body. Doesn't it put me at risk for cardiovascular disease, as well as cancers. She did not once say, let's do a blood draw before your next visit to make sure your numbers have come down. Oh and take the Mylexocam as needed. Really???????

  • If you don't have any infections or autoimmunity then having a raised CRP and high ESR is significant and can be a strong indication of cardiovascular disease or even certain rare cancers.

    But if you do have an inflammatory disease then having a high CRP is usually an indication that it is active rather than anything more sinister. And both steroids and anti-inflammatories such as Meloxicam should reduce the inflammation levels temporarily - although you do need to make sure that your stomach is protected because this group of medicines is harsh on the GI system.

    You can have a heightened/ exaggerated sensitivity to pain with Lupus, Sjogrens or RA or others, which might be classed as Fibro, secondary to your autoimmune disease. Many people are told they have this so please don't assume that it means you aren't being taken seriously. But CRP of 27 is quite raised and your rheumy or GP should be checking to see if it comes down with steroids or Meloxicam as it ought to. So there is method behind your rheumy's thinking I believe. Just ask your gp or primary (US) to check this after a few weeks and before your next rheum appointment.

    The CRP reflects an acute phase reaction, so it can swing right up (mine reached 160 when i had Pancreatitis and came down to 2.5 after a few days on powerful IV antibiotics for example) and come down again to normal within hours after antibiotics or nsaid or steroids take effect. The ESR and PV are both more of a measure of a longer term reaction to inflammation or infection so these don't swing up and down as much within hours or even days. They go up more slowly and come back down more slowly. All are very non specific measurements.

    Knowing your baseline "normal" for both CRP and ESR/ PV is helpful and then a pattern can be observed to measure your own normal ranges. People with rheumatic diseases and inflammatory bowel diseases tend to be always rather high in range although it varies a lot from person to person and disease to disease. Some have inflammation despite only a very minimal rise in levels. People with Lupus often have high ESR but normal CRP. Your rheumy will be taking all this into account.

    I understand how you feel about not feeling great about having systemic inflammation in your body. This is why it's important to take the anti-inflammatory (such as Meloxicam) for 4-6 weeks to see if it helps. For some auto inflammatory diseases such as PsA and AS, NSAIDs are actually a main part of the treatment protocol. But again, do make sure you take a good stomach protector such as Omaprazole while on this medication and also with steroids.

  • No it isn't good to have a high crp and is a sure sign something is up. My crp was 39 and esr of 58 at one point and they said I was close to a heart attack or stroke. Remember everyone is different though, my crp is normally less than 1 and my esr 5 but I always keep my bloods to know what is normal for me. Keep your results and check them. Antibiotics decrease my esr and crp and when mine rises it is usually a sign of infection. Keep the pressure up, I know it's hard, blimey it took them 39 years and a very famous psychic medium to diagnose me before they gave me the test. Then my gp said 'oh I always thought you had autoimmune' I nearly throttled her! They know so little about these disorders.

    I see a Dr D'Cruz at the London lupus clinic who is fantastic at listening to the individual and has recently stated investigations for me for another immune disorder. Again I've known something else is wrong but getting someone to listen was hard.

  • sadly it would seem that care at present is so bad - too often I have been fobbed off and dismissed and comparing that to the care that I received before my consultant retired, it just sucks. Although I remember my (old) consultant explaining to me that with lupus you will get a high ESR and a low CRP, whereas with arthritic conditions etc, the CRP will be high along with the ESR. I know the health service in under stress at present, but recently too often I have heard and witnessed patients being dismissed, conditions misdiagnosed, terrible care and ever expanding waiting lists. I don't think that its down to staff, they are doing their best with terrible cutbacks, and terrible contracts. I don't think they trained to be like this at all and unfortunately it is always the patient that suffers. This will not make you feel any better, and the only redress that I can see is to look for the best rheumatologist you can find and pay to go privately for the first couple of appointments. Their diagnosis along with the connections might give you a better outcome.

  • I have just come to the conclusion that they have no idea and so little to offer patients like us in the way of medicine.

  • I'm going through the same process it's very difficult !!!!

  • I got off the medical train. My question is always WHY and since it is not answered, I said forget it. Cut way down on animal products, especially meat and it made a HUGE difference. To each his own, said the lady who kissed the cow.

  • I had a Dr like that. I was feeling so sick all the time. I kept going to the ER so sick. I finally found a excellent Rheumatologist. Keep searching for a good Dr that specialises in autoimmune deseases. I live in Ca I have the best Lupus Dr. Don't get frustrated. You need every drop of your strength. See if anyone on this site can refer you to one of their Rheumatologist. I will pray for you.

  • I live in ca too. Who is your lupus doc?

  • Dr Robert Goldfein. Richmond Ca Kaiser Richmond. Excellent Ruemy Dr. U have to stay on top of your blood work. He won't remind you he only puts blood work in the computer stating that when you go to the lab they know you are always in the computer so you need to stay on top of your lab work every couple of months. When you see him he doesn't rush u out the room. He goes over every detail of your medical condition. U have to be a Kaiser member.

  • Ahhh you live in Northern California. I live in southern California and have seen some really good doctors at scripps and ucla but I'm still finding that it's difficult for them to really understand when j discuss some of the issues I ha e

  • So sorry you're going through this but listen carefully, do not give up!!! The medical community doesn't often understand autoimmune conditions fully and we are often misdiagnosed. The average amount of time for diagnosis is something like seven years. Your body most likely won't give up with the pain so why should you give up? I'm not sure what your symptoms are but would be glad to help guide you in any way I can. I too had a positive Ana at the onset of my "sickness" and then I became negative, my crp/ESR levels always have been high and the symptoms were strange to say the least. Fibromyalgia does not show up with a high inflammatory marker!! You need an excellent rheumatologist that you trust. I went through five of them before this last one had no doubt in his mind my diagnosis and wants to begin aggressive treatment. So do not give up hope ever! We are all here to support you and know what you're going through!!!

  • Oh wow same with me i had a low pos ana in 2003 was giving plaquanil to treat pos MCTD then 6 months told nvm its fibro... well that maybe so but its much more. None of the fibro meds work ive been on lyrica gabipentin meloxicam flexaril tramadol ect...

  • oh so familiar, wishing good luck with your journey. x

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