Confused about GCA diagnosis

Hi

Yes the pain was very much better within 48 hours or so.

I went back to the Ambulatory Acute Medical Ward yesterday and asked them about my GP reducing the dose, they were brilliant and arranged for me to see a Reumatologist Consultant who confirmed that I do need to continue the 30mg of steroids and he is arranging a biopsy (he said within 7 days) he also gave me bone protection and stomach protection meds as well, another thing the GP said I did not need!

I hope now to have the biopsy in the next few days and then take it from there.

Did you also feel generally unwell and sort of disinterested in things as well, I'm usually quite a motivated person but do not feel that way at the moment?

Thanks for your help

 

Now that's the way it SHOULD be! Be interesting to see if the GP is going to argue with a rheumatologist.

Yes - it is common to feel generally unwell with GCA and PMR, sort of as if you have flu. It is a serious illness - don't be fooled just because you can't see anything. It all depends on how many of your blood vessels are involved but you can feel pretty ropey. The pred doesn't help of course.

Get well soon.

Pam, now that's what a call a result!  Big tick to all concerned.

I didn't feel "generally unwel", I felt as though I was dying.  I'm sorry if that sounds dramatic but I was progressively getting more and more ill with severe head and jaw pain on chewing over almost a month, with three GPs over that time not having a clue what was wrong other than to suggest firstly an allergic reaction to a BP Pill, prescribing antihistamines; secondly when vomiting and sickness joined in the fun, I was prescribed anti-sickness pills, and thirdly just advised to see a fourth GP the following week.  I lost a stone in weight in that time.  A wonderful pharmacist came to the rescue with suggested GCA, confirmed by the 4th GP, and 40mgs of steroids wokred their magic within hours.

As for you feeling disinterested in things, that isn't at all unusual but unfortunately to be expected due to both the inflammation in your body and side effects from the steroids.  Be really kind to yourself, with lots of TLC and rest whilst those steroids do their job.

I wasn't prescribed bone protection meds (the GP thought the rheumy had put me on them and vice versa).  I was prescribed a PPI, Omeprazole, for stomach protection but unfortunately it did the opposite, upsetting my bowel, so was switched to Lansoprazole.  That caused pain (I'm an awkward patient!) and at the first emergency appointment with my rheumatologist he told me not to take them.  I relied on a 'live' probiotic yoghurt daily before the steroids and never had any further problems.

With regard to the bone protection medication, you should really ask for a DEXA scan to find out the present state of your bones - if all is normal now and there is no sign of thinning, then you may not need to take the bone protection meds.  If you do already show signs of osteoporosis or osteopenia bone protection may be necessary, but you need to be aware that if they are bisphosphonates, they can bring their own quite serious problems and, in any case, current advice is that they must not be taken for more than five years.  I had a private DEXA scan shortly following diagnosis and all was normal.  A repeat scan a couple of years later showed very slight change into the osteopenia range (the stage before osteoporosis) but not in need of medication.  My latest scan a year or so after discontinuing steroids actually saw a slight improvement.

I'm sorry for a bit of a lengthy reply but hopefully it will prove helpful.  Good luck with the biopsy. 

Hi, Pam- I am so glad you went for another opinion.  Your GP's rationale for reducing the dose below a typical GCA dose (and somewhat on the low end for that) to a PMR-type dose seemed shakey.  

I have had a lot of trouble with fatigue, inability to concentrate, and lack of motivation in the last few months, expecially after reducing from a high dose of prednisone given to me when it looked like I might have GCA.  After about 3 weeks on 15 mg. things seem to be getting better. I don't expect to feel frisky as long as the PMR is with me, but I hope not to feel like collapsing all the time!   

 

In my case, PMR did not mean "aching all over."  The pain was in very specific spots, even when it was in many places.  If you can't roll over in bed at night without yelling, you may be a candidate!  Also, if you can't raise your arms (forward or to the side), so that you have to plaster both elbows against your sides and use one hand to lift the other to turn on a lightswitch or brush your teeth. I also hurt at the back of the pelvis (just below the lower back) and sometimes at the back of the knees.  The pain felt like I'd gone from being totally sedentary to training for the Olympics in one day- how would your muscles feel the next day?  

Not everyone has the same degree or type of pain, but it would help if you'd describe where and how you hurt. Or, still better, call your doctor! 

Maybe - but how did you reduce down to 5mg? This is the realm in which your body has to start producing its own corticosteroid again, cortisol. If you remove the artificial verson too fast your body is deprived of an essential substance and it can make you feel quite ill and very shaky. 

And what superb service you had, both from GP and rheumy. You were lucky, most GPs don't recognise GCA as it is relatively rare and they may not have come across it before. That is how a biopsy should be done but it needs access to a surgeon who does them regularly and a time slot that matches.

Hi

I am due to have the biopsy tomorrow and hopefully then all will become a bit clearer, I have a schedule for reducing the pred from my reumatologist which will be 5mg less each week for the next 4 weeks and then he said we can re-evaluate (i am currently on 30mg per day) and do still have a slightly uncomfortable feeleing at my temple but I understand that the pain doesn't completely go?  I also feel pretty tired but am sleeping reasonably well so that's a bonus.

Pam, a lot of rheumatologists want to reduce at level, mine included, but it's too quick. Having learned from this group, it needs to be much slower and my rheumy now accepts that I won't take the risk.

I started at 40mg mid December and am currently on 25mg and even that was very likely too quick. I was completely exhausted at the higher levels and had real problems thinking straight and concentrating. That hasn't disappeared yet, but is certainly better. I'm currently signed off work due to a lung infection, but did go back to work for 3 weeks on a gradual return before I caught the lung infection.

I always have an "uncomfortable" feeling in my temples, a sort of pressure.

Wishing you well for tomorrow.

If it does turn out to be GCA with the biopsy than that is far too fast a reduction - that would take you down to 10mg and there is no way that is enough to manage GCA. A dose of 30mg is a very low dose to start at for GCA, 40mg is more usual and even higher if you have had any visual symptoms.

If you go to this thread, 

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

the second to last link in the first post is to a paper about managing PMR and GCA. On page 5 or 6 there is a recommended scheme for the first 6 months of managing GCA - they start at 60mg and reduce by 10mg per month so it takes 5 months to get to 20mg. Even then, they sometimes have flares.

Sussanne M, well I had the biopsy yesterday at 5.20pm after waiting since 8am with no food since the night before and no water since 7am.  It was a very long day but am glad it's done and now to wait for the results!!  I am assuming I will be given an appointment to see my rheumatologist with a plan for my future care with or without a positive result.  I have to say even given the long wait the staff at my local NHS hospital were brilliant, I feel they are dedicated people who are often let down by the infrastructure and administration of the NHS.

Hi Pam

Goodness, that must have been awful, especially no water. Glad you are over it now.

I'm sure you will be given appointment with rheumy. As you no doubt know, the biopsy is not always conclusive and diagnosis may be based on symptoms and bloodtests.

I've nothing but praise too do the nursing staff and doctors at my local hospital, having spent 3 nights there last week (severe chest infection).

Hope you are feeling ok and get some rest.

You definitely don't work in the NHS for thanks or the money these days whatever certain daily newspapers would have you believe! Been there, done that 

So pleased to hear it is done and dusted despite the long wait - but no wonder there are complaints about patients being dehydrated!