What am I going to do?

Now down to 11mg pred and my mobility is not good i also have pain in my knee and I know I have osteoarthritis in my right knee , I was trying to remain positive but today I just broke down, I go to the doctor who does not want to give me any kind of scan, and says speak to the rheumatologist , so I go to the rheumatologist and he does not think I should have a scan and just to get down from steroids

So this is my predicament ... Do I change my doctor and hopefully get a more understanding one? ... Or do I insist that I need a scan to find out what is happening with my back and hips .

My rheumatologist does not seem to think I have pmr and says that I have a degenerative spine, he knows this by me bending forward and running his hand up my spine as I have NEVER had any scans so far and I have now had GCA for a year now.

I feel as if the only people who care are the people on this site, and I feel as if I am invisible everywhere else .

Please has anyone got any suggestions as to what I do next, do I go back up on the steroids or ride this out till I see the rhemy next month.

15 Replies

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  • Hello lynabelle

    I'm sorry I've not much advice, but you sounded so low I thought I must reply.........why are you on pred if your rheumy doesn't think you have pmr?

    I would push for a scan of some sort - I say this because only after nearly a year of bad pain was I able to persuade my GP that I needed one - she contacted my rheumy who arranged for an MRI and lo! I have NO cartilege left in my right hip and little in my left - a hip replacement coming when I've got the steroids down enough (that's another story).

    You are the person who knows how you feel, obvious as that may sound, and it may be necessary to get a bit pushy!

    Hope you feel better soon

    venezia1

  • Thank you Venezia 1 yes I think I do need to be pushy and thank you for replying you have been a great help

  • Good Morning lynabelle..you must keep pushing your Gp and Rheumy for a scan it's your body and your pain. I went through this last year with my previous Rheumy who just wouldn't agree that I had PMR because it never seems to show up in my blood tests but she also said that she didn't recognise PMR so go back to your Gp .I came out of that meeting in tears because it was a bad PMR day. Went back to my Gp who put me on a reducing plan that was too fast for me and I ended up in bed for most of January..Another Gp came out to me and I am now getting somewhere slowly . I begged him to let me see a new Rheumy as I was told he was worth waiting to see and I am now on a new reducing plan .I am only down 2.05mg on steroid but at least it's a start. I feel for you with your pain as I was in tears all day yesterday . My Gp gave me some separate 15mg codiene to take with 500mg paracetamol so I took some extra codiene yesterday and the spine has been slightly easier . I don't know if you would be able to do this? Keep pushing and stay strong best wishes Trish29

  • One small thing - if your knee is sore it will affect how you are standing/walking - so your spine will be affected by this - so that pain will add in to whatever it is you have. Physio may help if you can afford it and find a decent one.

    I have a really superb physio who always does the bending test on me, and has kept my back good for years....but even he cannot diagnose Osteoporisis or any other condition doing this - it does not show what is going on inside the bone, or in bones around the back. He can make suggestions only. So how your GP thinks you are fine by doing just that test - well, I'm aghast. Do what the others are saying and push more - but use reason - they can't say anything against a reasoned reply. You could challenge GP on the diagnostic method being used. Push for those scans!! It was only a DEXA scan that showed up my osteo and everyone dealing with me was surprised I had it (including me!), due to my always doing contact sport, eating well all my life and nobody else in family with osteo.

    Good luck and let the us know how you get on. Green_Girl.

  • I really feel for you, Lynabelle. How horrible to be fobbed off all the time. The point is that you are in pain and it is their job to help you to get rid of it! So, whatever the reasons for the pain, you need to be free of it. Reducing the pred. is not going to lessen the pain so is not a response to that, even if it is the right thing to do for other reasons. Do they still believe that you have GCA even if you don't have PMR? If so, then of course you need Pred. anyway. The worst thing about PMR and GCA is that we have so many different symptoms, it is always hard to tell what is what, but that doesn't mean we have to put up with the pain! Probably because I am still going to see him privately (only for the next 2 months, however) , my Rheumy has sent me for an MRI scan to check whether the pain in my hip is inflammatory or something else going on. But, on the NHS, my GP has also referred me for a DEXA scan, even though the Rheumy didn't think it was worth doing!

    I think the fundamental problem is that Doctors don't really understand that much about auto-immune, inflammatory conditions which is why we all have such a variety of advice from them. I think it is probably our job to work with them with that understanding, so that we can use sound logic and argument to persuade them to see it from our individual perspective. The good and also bad thing about my Rheumy is that he is rarely definite about anything because the fact is, he doesn't really know and is able to admit it!!

  • Lynabelle

    You have GCA and all this pain, can I ask if you have had a Vitamin D deficiency test. If not ask for one urgently.

    Vit D deficiency causes exactly the same pains as PMR. If you are deficient you need Dekristol 40,000 units per day to get it back to where it was (This is prescription only) . Once up to normal use a maintenance dose of 1000 units per day available at Boots.

  • Lynabelle so sorry to hear you are in pain and feeling that your docs aren't listening.

    Reading your post I am unclear about what you want scanned (your knees? your hips? your back? all of them?) or what kind of scan you want?

  • All of them I suppose I have pain all over, but I may be what sambucca said that it is a vitamin d deficiency so I would need to get that checked out as well , I suppose I will have to go to the doctor and get a blood test for that, would it have shown in the blood tests I have had so far , the last one I had was last month I will have to check and see, I have managed to get my rhemy appointment changed from October 30th to October 2nd

  • Lynabelle, - it's unlikely that your Vitamin D levels have been tested along with your routine blood tests. It is a separate test - I had to request it and most others seemingly have had to request it as well. I was found to be deficient with a reading of 36 and a 3-month course of just 2,000 units a day of pure Vit D3 (Colecalciferol) restored my levels to 89 (normal is considered to be anywhere between 75 and 150/200, depending on your particular area guidelines. Good luck with your rheumy appointment.

  • Hi lynabelle so pleased you have got your Rheumy appointment brought forward. Let's hope you soon get relief from your pain. I took extra codiene with my normal painkiller today of which my Gp suggested I try to do and I managed to get out to the Dentist and lunch with my partner and friend. It was nice to feel like a human being and be able to go out and just get a spell of relief from the pain. I hopefully get my x/ray on my spine tomorrow.. Take care and get that VitD test done.. trish29

  • Its good you have managed to get your appointment brought forward because that is a long time to wait if you are in such pain. It is definitely worth asking them to test Vit D levels...as far as I know this is not done routinely.

    I hope you are able to get some relief soon

  • Hi Lynnabelle, I really feel so angry for you, How can a doctor expect you to cope with this horrible condition without proper pain control? I do know how that would make you feel as I have been treated in almost the same way. Apart from the initial consultation when I was diagnosed Three years ago I have never really seen my doctor. My management is usually done over the phone and sometimes I have made the decision to change my own increase/decrease of pred. I was told off about it though ha ha I was having pain in my right thigh and shoulders 4 yrs before I was told I had PMR. this was treated with paracetomol so you can imagine how much pain I was in. I hope you feel much better soon and keep your chin up

  • Thank you , it really isn't right is it , the way we are treated and just left to get on with it on our own , after all these replies I dont feel so alone , but I do feel angry at the way we are treated.

  • Hi Lynabelle

    I hope your rheumatology appointment goes well. If they don't order a scan they should at least do x-rays. (I can't have an MRI scan now because of my artificial hips!) If they agree that you have osteoarthritis in your knee you may be suitable for a knee replacement. The fact that you have arthritic changes in your spine doesn't exclude PMR. If you already have GCA it would seem likely. I have PMR and spinal problems. Your doctor should be able to arrange some physiotherapy sessions. This will assess whether there is an imbalance in the way you walk - and arrange supports if necessary, and could help with TENS or other pain relief.

    I hope things soon look up.

    Ann

  • Thanks missrat

    I am more determined than ever to get a scan and a vit d accesment

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