Hi - I'm |Barbara. Last week diagnosed Giant Cell Arteritis and Palindromic Rheumatisim. Had the pain and all other symptoms for 2 years - GP baffled. Recently really bad flare red, swollen, extremely painful wrists ankles. Pain in left side of head more often than normal and difficulty eating. Rhuemy started me on 30mg Pred and booked me in for body CT scan and x-rays, blood tests (last 2 ESRs 80) mentioned might need biopsy - yuk. He told me the pred would help the inflammation for now but he wants me on other medication but until have results from tests can't start treatment. Inflammation settled but let my fingers, wrists, neck, knees and ankles very stiff and sore. I have constant cramp in my left thumb which locks into the palm of my hand, very difficult to release, also really bad muscle spasms in both forearms. At this very moment I feel that the pain is coming back (especially in my left wrist and left shin bone. I really really don't want another full blown flare. Don't know whether to bother my GP. Any help would be appreciated. Thanks for this website - what a mine of information!
Muscle spasms and cramp: Hi - I'm |Barbara. Last... - PMRGCAuk
Muscle spasms and cramp
Babs, rather than not wishing to bother your GP, as you have been diagnosed with two very painful and serious conditions and feel that your might be going into another full blown flare then you need expert advice. Has the head pain disappeared/improved on the 30mg Pred dose? In the case of GCA, it is usual to be prescribed a much higher starting dose to get control of the inflammation, plus the biopsy should be carried out within a week or two of starting steroids. With regard to the Palindromic Rheumatism, you might get more advice if you post a question in either the Arthritis or the Vasculitis community.
Hi Celtic, thanks for your informative and helpful advice. My Rhuemy started me on 30mgs as he told me that because I am only small and weigh just 7st he didn't want to put me on more. I saw him privately for the initial consultation (just to get to see him) He has now referred me for NHS treatment which I am having difficulty accessing as no appointments (have actually been accused of trying to queue jump!). Head pain is not as often but have what I call painful glands in my throat, not like a sore throat but painful to swallow. Don't know if this is something entirely separate. With being new to all this I find every little niggle has me worried. Is this a normal reaction? Thanks Babs
Hi again Babs
Rather than be accused of trying to "queue jump", if you are even suspected, let alone diagnosed with, GCA your GP, apart from instigating treatment with high dose steroids, should have arranged immediate referral to a rheumatologist for confirmation - I was referred and seen within two weeks. After a fast track trial in one part of the country, some patients are even being referred on the spot.
GCA can affect muscles in the neck making it difficult to swallow, but so can other conditions, including rheumatoid arthritis - Palindromic Rheumatism can morph into the latter.
I'm not surprised that you are feeling worried. I, and I'm sure many others here will both sympathise and empathise - I well remember my bedbound days in the year before diagnosis wondering if I'd ever be able to put one foot in front of the other again without crumbling to the floor in agony. Ignore the accusations such as "jumping the queue" - it's your body so demand that it gets the treatment it deserves....and is entitled to.
With GCA the usual starting dose of steroids is 60mg. After almost 4 yrs with PMR/GCA I am on 5mg but get a lot of muscle spasms & cramp especially in feet & legs!
I do have 6monthly checks with Rheumatologist & monthly with GP. Good luck with your problems.
Hi, If you are worried about taking up your doctor's time by going and seeing him you could try a telephone appointment. Phone the surgery and ask the receptionist if you can speak to the doctor. He should then phone you back and you can voice your concerns. It helps to have things written down in front of you so you don't forget something you want to ask.Doing it this way is quicker for the doctor and doesn't involve you having to traipse to the surgery. It also gives the doctor the option of just giving advice, writing a prescription to help you, or calling you into the surgery for another checkup, in which case you will get your appt quicker.
My suggestion to their "queue jumping" accusations would be either "Walk a mile in my shoes" or totally ignore them, depending on who it is.
Hi Pauline - thanks for the tips. Love the quote! Babs
Hi Babs. I have GCA diagnosed 6 months ago. My GP prescribed 60mg Prednisolone and referred me to Rhuemy, I got an appointment within 3 days and a biopsy within a week. (I already have RA so was on Rhuemys books so that may have sped things up. My biopsy was negative and they decided it wasn't GCA, so tapered on Pred, got down to 10mg and the pain returned. I went back to the Rhuemy ( no appointment, I just said I would just sit and wait 'till he saw me) My head was in so much pain there was no budging me! They did bloods CRP sky high and within 2 days I had a PET CT scan which showed GCA in the Aorta. They upped the Pred until markers came down and now I have tapered to 10mg and plan a 1mg a month drop. But my GP is still monitoring my bloods every two weeks. Sorry for the long post. But I think it shows you sometimes have to be a bit pushy. You know your body better than anyone else and if something doesn't feel right then go back to the doctor. x x personally I think you need to stay on a fairly high dose of Pred until the inflammation has gone, so you do need regular blood tests to keep an eye on this. Xx
Hi Carol. Its so good to have the understanding and feeling of security within this community. I am understandably concerned re the attitude of the medical profession. I phoned the surgery yesterday and spoke to a GP who I have never seen before. She gave me more a/bs for my breathing and told me to isolate myself as my immune system is shot and can't fight infection - i'm not hiding away! She also gave me a 2 week course of Arcoxia (nsaid) to control this new flare. I told her the Rheumy told me to stop these. GP said ok to take them. What do I do? Not concerned that I staff have not got an appointment for scans and biopsy. Told me to go to out of hours over the weekend if it got any worse. Great help. Thanks again and hope you continue to feel better x
Ask for a telephone appt with a specific doctor at he surgery, even if it means waiting a couple of days before it comes through. Choose a doctor that knows you and you are comfortable with and tell the receptionist that they are the person you wish to speak to. When you succeed in getting through voice your concerns regarding conflicting advice between rheumy and GP and ask how you are supposed to get on with your life when the other one said to isolate yourself. You have the right to speak to the doctor you choose within your surgery so don't let the receptionist put you off. They are likely to try. You need to have faith in whomever it is you are consulting with.
Thanks Pauline. My usual GP isn't in the surgery on Fridays that's why I had to speak to another GP. I intend speaking to my usual GP on Monday - he is brilliant, he was the one who eventually suspected GCA and Palindromic Rheum. Just to let you know I got an appt for the NHS Rheumy - 27th September and not with the consultant I saw privately who requested an urgent referral. I'm getting really angry now!!!
NSAIDs and pred - especially at higher doses - should not be mixed as that increases the risk of gastric bleeding. I know the makers of Arcoxia say it is LESS gastroirritant but less is NOT the same as non-. I do find it arrogant when a GP disagrees with a specialist on such things - not that specialists are always right.
In reply to your other post - urgent is not what he wanted and he should have known that. He needed "emergency" - urgent merely means faster than usual and it can still be up to 12 weeks or more so the end of September isn't bad when you consider that for the next 7 weeks there will be fewer doctors (they have family holidays too) and if it is the wrong day - no clinics on bank holidays. By the way - do check as on my calendar the 27th September is a Sunday!
Contact your private guy's secretary and tell him what is happening - or not as the case may be.
Thanks for the info and advice. Got my dates mixed up - 18th Sept my appt. Still intending to speak to my GP tomorrow. Do you know how much the relevant tests costs privately. As you can tell I am at my wits end!
Which tests do you mean? If it is the CT scan and so on that you mentioned before an ordinary CT is pretty expensive (by everyday standards, not the NHS's) depending on where you go. A quick google says from £364 to £809 with an average of £672 according to a site called privatehealth.co.
I think that really you do need to be patient - it may sound harsh but you have had this for 2 years, another 7 weeks isn't much. I also imagine that, since the CT and stuff has been booked, that the appointment is aimed at being after the CT has been done and the results read - even done privately you have to wait for results. Without those results the rheumatologist cannot make any decision about what you have. Palindromic rheumatism is a form that comes and goes, read a bit about it here
arthritisresearchuk.org/art...
and can be confused with RA - where the joints are damaged by the disease which isn't the case in palandromic rheumatism. He needs the information to decide which drug is best for you.
I don't know what the situation is now in the UK - it used to be that if you once started private treatment you would be expected to pay for your treatment to the end of the disease. It may have changed of course - but ongoing private treatment without private insurance can be a very expensive matter since drugs are sometimes very expensive. People in the UK are spoiled about the real costs of medical treatment since you don't get the bill, the NHS foots it.
By the way - it occurs to me that the consultant may have said to stop the Arcoxia because he needs to see what's going on without it clouding the view. It isn't unusual for patients to be asked to stop the drugs the GP has handed out to do just that. I know it may then be painful but in the longterm it may make a big difference.
I think you need to discuss this with your own GP tomorrow, asking for an emergency referral which he can do - especially if there is any question of GCA which counts as a medical emergency. If the hospital are still being obstructive then call the consultant's secretary and ask what to do. That is what they are there for.
Hi PMPro. Very useful advice and comments. The only problem I have is that the tests have not been booked. When I saw the Rhuemy privately he said he wanted an urgent NHS referral so that he could order the scans and blood tests - he also wants to do a DEXA scan. I don't think he has even seen the NHS referral as the appointment has come back to see a different named consultant -or, as the letter says, one of his team.
I will discuss options with my GP tomorrow, Thanks again. Babs
Ring the rheumy - or at least his secretary. Between them and your GP they should be able to arrange an emergency appointment with him because the GP can contact him too. It'll be job's'worth managers who have never worked at the coal face who manage the appointment book. Once upon a time the GP rang the consultant's secretary and that was it done...
The managers wouldn't get to do this if it were a stroke or a heart attack - same sort of medical emergency.
Hi - intend to see my GP today - I will be forceful. Thanks
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