Feeling unheard

Just spent ages writing my story then whoosh it disappeared.

So I am bullet pointing main facts.

Had rheumatologist appt today to discuss GCA/PMR.

PMR symptoms in July but ESR not showing much inflammation so continued with my pain filled life all Summer. My symptoms seemed classic of PMR. Nothing would help the pain.

Back to GP. Had another blood test and started on 20 mg steroids, warned about GCA, and realised had symptoms so dose increased and symptoms improved. Inflammatory levels up.

Rheumatologist yesterday said I couldn't have GCA because of levels and symptoms.

Yes I had PMR but it didn't start until SEPTEMBER because that's when my levels rose. I asked about prior symptoms, he said he must have been something else!. All down hill from there. It seems no raise levels no PMR. Even though Symptoms responded so well to pred.

I just became a blubbering wreck and couldn't fight my corner, he gave my a tapering regime, a second opinion if I wanted.I know he deals with this condition daily. But I have read on here that 1-5 people have a nil result on blood test but still have PMR.

The result is I feel very lonely, unheard, weak, keep crying, can't sleep, don't know what to do.

I have a history of autoimmune MS, Undifferentiated Connective tissue disease, auto immune hepatitis. Has anyone had similar experience or negative Esr.

43 Replies

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  • You are not alone so don't cry (it uses too much energy). It does not matter when they think it started mine certainly started 8 months before diagnosis because it comes when it wants and goes when it wants. Read Kate's book and get family and friends to read it too and it will all make much more sense. The others will give you more practical advice but I just wanted to reach out.

  • Thank you for your reply, can you give me the title of the book please. Thought seigniorage the rheumatologist would help, he actually said to look at this site but it seems he doesn't agree with statement that about the inflammatory markers

  • Kate Gilberts Polymyalgia Rheumatica and Giant Cell Arteritis a survival guide by Kate Gilbert. Available on amazon. there is a new one too but I don't know the title.

  • I just received my book and it is spot on very informative and most of all comforting that someone has articulated what we are dealing with. Thank you Kate

  • What an amazing coincidence that you should develop PMR some time after you yourself thought you had it (!!!!!). Perhaps he credits you with psychic powers? Also, Re: "I am dealing with these cases every day" I am minded of the teacher who claimed 20 years experience. To which the reply was "Yes, the same year repeated rwenty times". In my case according to my otherwise sympathetic rheumy I may have had it before she saw me but again, no raised markers, no PMR now but I think it is still lurking as I taper my pred. for the 3rd/4th time I am hoping to get past the sticking point in the past of 2½ mg at a rate of ½ mg a month

    Others suffer because they "are not old enough" i.e. 50 plus.

    You will find a lot of support on her

    Best wishes

  • Happy I am not the only one with this problem. Too much black and white and not looking at the grey areas where we don't fit into the grey areas. Only we know our true symptoms and can feel our pain. The mad thing is we don't want to have PMR but being diagnosed properly brings a sense of relief. I think he thought I blamed my GP for missing it early on, as I mentioned what a bad painful summer I had. I am having a blood test in 4 weeks and seeing him again. Hope I can keep it together this time and not become a nervous wreck. Find it so hard to explain things and talk about myself.

  • I cried all Sunday . Everything just blew up out of all proportion .

    Eventually , when I had pulled myself together I re read the Kate Gilbert book and everything fell into place .

    Also the radio 4 extra app is a must for the long nights but don't do the comedy or you will never go to sleep !

    Do hope you feel better soon .

  • Thank you, have just ordered the book👍Really didn't know it would be this hard.

  • I have never had a raised ESR or CRP - ever. That was why it took me 5 years to get a diagnosis - which didn't happen until I had done the research and presented the possibility to the GP who hadn't recognised it. I also got an unhelpful rheumy who wanted it to be anything except PMR despite the miraculous response to 15mg in less than 6 hours (which he wasn't interested in). However - a different GP in the practice who had previously been on maternity leave was convinced enough to provide the prescription.

    I am a patient research partner with one of the research groups in the UK alongside probably the 2 best rheumies in the country when it comes to PMR/GCA. They agree that my description of what I had fits fine with PMR. So do the local doctors here in Italy.

    i doubt he DOES deal with it daily - and the patients he has like you don't go back to him. I wouldn't (and didn't go back to the one I had). His attitude is the reason so many cases are missed unfortunately.

    He offered a second opinion - I'm not sure I'd want one in HIS department but it is an idea. Where are you? Which hospital was it?

  • I live in the U.K. Dartford Kent, Darent Valley Hospital, Dr Srirangan.

  • I have "met" 3 or 4 people on the forums from Kent who have really struggled to get a rheumy to listen to them about PMR/GCA because they weren't absolutely "typical". One of them now travels to Leeds for her care - she may respond to you. Another tried 3 different doctors before she found one who would take her seriously, she isn't on this forum though.

    I know what I would do in your place - I would bite the bullet about distance and ask for a referral to Dr Hughes at St Peter's Hospital in Chertsey for a second opinion.

  • We have the same rheumy here in Ashford and are seeing him again in the middle of November. Saw him back in May for the first time, a month after leaving hospital having lost sight with GCA and he put Joyce on a tapering dose of pred. But she has got worse with each reduction. So when we see him again we are going to try and be a bit more assertive and question the dosage.

    Your not alone, this forum has many good people with good advice.

  • O my god that's terrible, it is horrible when you feel you have to go into battle against the "experts" to get the support you need. I first met this dr with connective tissue symptoms 4 years ago and it has been a battle since. Mainly over blood test results. I wish you luck, please let us know how it goes

  • Then for goodness sake - why haven't you contacted him before. Doctors aren't psychic, if you don't tell them she has problems - how are they going to know?

    You can phone his secretary or send him an email outlining the problem. I know others on the forums who have done that and got an emergency appointment. He was the speaker at the Chertsey support meeting this month - he is very accessible.

  • Not having ever been in this position before we didn't know you could do this. Just getting the appointment we have has involved a number of calls to the central booking centre and the usual run around that you get from large organisations, which as far as we knew was the only way to get one. The GP has been aware of her problems.

  • Then your GP needs a shake - they could have contacted him and asked for advice. Or told her to stop reducing.

    Has she not been given a contact number for a rheumatology nurse for support? By no means all hospitals have them, but many do. But you can't lose anything by calling the rheumatology department and asking for help - and in my experience, he is very good at that.

  • And a PS - I have been told that Dr Hughes has a rheumatology nurse for patients to contact. Were you not given a contact number?

  • First I got our rheumys name wrong he's not the same one as yours vsapey.

    Seeing the GP this afternoon, have made a list of points to make. Thinking back it was probably when she was on 25 or 30 that she felt better. This has all been uncharted waters for us so perhaps we could or should have done more but we have done what we thought for the best. As her carer I feel really bad as I haven't more.

  • No, don't feel bad about it - it is a whole new place for you both and you sound to have been left to flounder a bit.

    What is the name of your doctor and at which hospital - I suspect we may be talking at cross-purposes here. Rod Hughes is at Ashford St Peter's hospital, Chertsey. He is outstanding and I would travel any distance to see him. But you see where the confusion arises!

    Kent rheumatologists in general seem to be less than ideal. Your GP needs to provide some sensible help - and if she felt reasonably well (it is after all fairly relative) at 30mg that is where she should go back to. Once she feels better she could then try smaller than 5mg reductions and see if she tolerates them any better.

    And she needs your GP to arrange some therapy - occupational and physiotherapy probably. And get the RNIB involved. However difficult it is going to be - she has to learn to live again and visual loss is devastating. Most doctors who have had a GCA patient with visual loss never forget it and it drives them to try to do better with future patients.

  • We are in Ashford Kent and the consultant is Dr Sukumaran. Saw the GP today who advised to stay on the current dose until we see him next week. Blood test shows level has dropped from 161 back in March to 20 now. The RNIB and the Kent association for the Blind have both been a great help as has this forum

  • Worth a try

  • Please don't keep reducing if there are symptoms, it's only going to get worse. Don't wait! She needs to be on the dose that keeps the symptoms at bay! What dose was she on when she was last comfortable? That's what she should be taking.

  • First, I've had the same xperience of typing my story and having it disappear into the black hole! Maddening!

    Secondly, I am sending you a big virtual hug, and wish we could be cozying up with a cuppa hot chocolate and a long chat.

    I don't have the technical knowledge of the experts who run this site, But I have had PMR for over 3 years and know the emotional and psychological experience of feeling lonely, unheard, weak, can't stop crying and can't sleep. Even now, its 2:30 am, as I sit here writing to you.

    So, just to let you know,...we are here for you, and send you our collective positive emotional support 24-7.

    Third, Doctors are not uniformly knowledgeable about PMR, and I suspect many of us have experienced feeling unable to "fight my corner" when in the docs office. If you have the option of seeing a different doctor, DO IT!

    Forth, become your own advocate! Most of my PMR wisdom has come from reading this forum, reading Kate Gilbert's book, and scouring the web for gems of information. My GP diagnosed my PMR, and the Rheumy I saw has been useless aside from giving me prednisone prescription refills. My blood levels never were never raised, so diagnosis was based mainly on how I responded to prednisone.

    Fifth, Once you're through your first year with this PMR, your system will settle down, and u will begin to find your balance, kind of like learning to ride a bicycle or do needlework . First you feel out of control and awkward, then you become more skilled, and soon, you will know more about what's going on. Try keeping a note book and briefly check in daily. It will help you track and begin to see patterns and progress. Promise!

    Finally, you aren't in this alone...there are several thousands of us out here with you. 😘

    Kind regards, Jerri

  • Thank you, good advice.

  • @vsape I hear your pain and felt it too. I had the aches like arthritis months before I Swelled and had a flare of fire sweep over my whole body lasting months before I could see a RA in the US. My original doctor wouldn't see me and gave me to a fresh young graduate of an expensive school- a mds assistant only who was clueless. Her inexperience was my suffering. I should have gone to Amy other doctor in town but getting out of bed was so hard. The system is weak. Keep fighting for your answers. I care about everyone suffering out there and know you will get through this.

  • Things are not going well, feeling very depressed and confused. Have reduced to 30mg from 40mg pred this week. Having a stressful time with husband ill with COPD flare.

    Still have it in the back of my mind that it is all natural my head!!

    But I am getting niggly pains in my jaw and temples. Is this GCA or just something else? Is it stress? Viral?

    My right shoulder and arm symptoms are there in the background stabbing away to get my attention. I have horrible fatigue. Seem to have blurred vision a lot of the time, is this the steroids?

    The consultant has sown the seed of doubt.

    I hate the side effects of pred.

    I question myself all the time. Should I go back to the same consultant or struggle to find a new one.

    GP appts are hard to get.

    When I first started on pred and the pains miraculously subsided, I thought yes, a road to recovery.

    What to do next?

    Be lost without this forum

  • The fatigue is the autoimmune part of the illness and the blurry vision could be and often is the pred - or it could be GCA - sorry, I know that isn't what you want to hear but that is the simple truth.

    I have to say - I would be suspicious that the shoulder and arm pain are add-ons to the PMR, they should be happier at even 30mg than they are. The niggles in the temples - that's a different matter.

    However - you are under a lot of stress, you are unwell yourself and that would be enough for me to turn up at the GP and demand an emergency appointment and a sensible discussion about another opinion. The fact the pains improved so much at higher dose pred DOES suggest there is, at the very least, an inflammatory component to what is going on. You obviously don't trust this doctor and are very unhappy (don't blame you, I don't think I would either).

  • Thank you

  • Over the last few days, have been feeling worse. On 30mg pred. Have constant pain in temples and over scalp, not too severe, pain in jaw & no energy. I also have a UTI infection. My rheumatologist ( who I have seen about before) told me I didn't have GCA based on presentation and blood results. He has no alternative suggestion for the pain in my head.

    He has told me to reduce from 40mg -20mg in 4 weeks as I don't need such a high dose.

    I don't want to be on a high dose, but scared incase it is GCA and effects my eyesight.

  • Then you need to go to A&E - you now have symptoms that can be typical of GCA. and the blood results are not gospel anyway. They may have risen in the meantime however. But there is nothing else I can add - you need to see a different doctor. And soon.

  • After GP visit today I am now back to 40mg a day, with the option to increase or decrease, I am being referred to a different rheumatologist for a second opinion, which should not be long. So feel more settled and will see if increase in pred will help with symptoms as it did before. Thank you everyone once again for your help and advice.

  • Let us know how it goes...

  • Have increased to 40mg, temporal head and jaw pain no longer decreased. Amazing!! Now how longer should I be on this level before I start reducing?

  • You do mean "temporal head and jaw pain no longer" or "temporal head and jaw pain decreased"? If so - that is great.

    You need to stay there until all the symptoms have improved as much as they are going to. But at least 2-3 weeks. Then you could try a 5mg reduction - if your GP agrees.

    However - given the symptoms and the response to pred you really need an EMERGENCY referral to a rheumy who WILL take you seriously. If it would mean going back to the other one - you'll be better to stick with your GP. But the GP should be calling to get you seen immediately - some hospitals do already have fast track GCA services.

  • Have a tremor In hands last few days, done know why, feel jittery too, fatigued.

  • Very probably the highish dose of pred. But mention it to your doctor.

  • Thanks PMR pro for the reply, what would I do without your quick response.

  • Just been to see consultant for 2nd opinion (Thursday).Had to start from scratch, giving an acct of my medical history MS. UCTD and my latest PMR/GCA. More or less what I have written in my 1st post and including my previousunhappy consultation. This time I felt more valued and managed to explain my condition quiet well. She had no access to any of my previous ESR blood levels. She examined me, said that temperol biopsy would probably be negative. She said she needed to look at my bloods and talk to my neurologist. She said some of my symptoms could be due to my "other conditions". She ordered a blood test. I said sometimes people with the condition don't have raised or have a low level. She said it was very rare!!

    She went on to discuss tapering, I was on 37.5mg. She said reduce to 35mg immediately for 2 weeks and then 30mg for 2weeks. I have a phone number to ring if any symptoms re-occur. She is seeing me again in four weeks time.

    So yesterday evening I started getting niggly pains in my jaw, my temples and tenderness in my scalp. Could this be a return of GCA symptoms? I have been trying to convince myself it is not, mainly because the doctors think my symptoms and blood tests are not typical of GCA. I don't know how severe the pain should be or what they are looking for. Could it be MS symptoms? The only thing I can go by is the fact that my symptoms miracously disappeared when I started on the steroid!! This is not enough to convince the doctors though.

    This morning I woke early, as I do, to take my steroids, the niggly pains in head and tenderness are still there. I have taken paracetamol to see if it helps. The perhaps I could rule out GCA symptoms. Reluctant to phone nurse specialist about symptoms and leave a message.

    My mental state at the moment is not good. I am doubting my symptoms, I feel very stressed and anxious. I have to write everything down in a list because of confusion. The other day at the asthma clinic, I had a peak flow test I sat there and couldn't remember how to breath in.

  • The literature says between 7% and 20% of GCA patients have normal bloods - I personally wouldn't count that as rare but she has her opinion.

    I do understand how you feel about your mental state - pred will do that to you. Are you on any other medications?

    If the symptoms are returning as you reduce the pred - then contact this new doctor again as soon as you can. She has, after all, given you a phone number. Tomorrow morning, first task, call her.

    And do make it clear to her that you are having all these other problems. There are other sorts of vasculitis that could possibly cause the same sort of symptoms - no idea offhand whether they normally cause raised ESR/CRP - and you do have other conditions that could be contributing. Write it all down - and if you can find someone to go with you.

    She has taken you seriously and listened - but she has to do some detective work, you have to provide the clues for her to work on.

  • Thank you predpro, sound advice, head a lot better today, no pain so far, just tenderness, could it be getting used to lower dose of pred. Will do as you say and get in touch.

  • You could well find it is steroid withdrawal that is causing it - if it is then it will improve day by day. It is if it seems to be getting worse that you need to worry.

  • Thank you, will keep an eye on symptoms. One thing I find really difficult is the emotional roller coaster I am seem to be on. Stress is horrible but very hard to control. The good thing is I can write it all down here.

  • I think a lot of people can identify with the emotional roller coaster - I certainly experienced it over 4 years ago when I was diagnosed with atrial fibrillation. For me PMR was a doddle - but the unknowns of a/f and what it might mean were horrendous and I was a wreck for a few months. But my GP was quite right in telling me it would be fine, to be patient. But it is far easier to say that than to believe it.

    If you can't let it out here - where can you?

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