GCA meds

After being what I thought fit and healthy nurse/Cancer centre manager at 54, I nosedived into GCA 3 days ago. Apart from cancer 12yrs ago and a three weekly mild neutropaenia (born with it) I'm very fit and active. After a brief consult with Rheum'y I am on 40mg Pred with no plan about reduction. I feel shocking on them two hours after and then bump along the bottom the rest of the day. Taking them at teatime is better and I sleep but the morning is heavy going. I may well have to give up my job. I have a few questions about meds. I realise any replies are peoples' personal experiences and I have to make my own informed opinion in conjunction with my doc. I will be having an argument/discussion with them though as I'm not happy with a one size fits all approach. It was my GP who suggested collaboration with the Haematologist!

Pred- why are we all given the same dose regardless of size and age? I'm small and tend to react strongly (good and bad) to every drug and seem to get the rarer side effects. I worry about my neutropaenia and steroids but the docs just seemed to avoid that bit. Do they ever go to a lowest dose to control the symptoms, increasing if it is insufficient? How easy is it to control effects with diet/fluid control?

Bisphosphonates - The oesophageal irritation worries me as I have the BRCA2 gene and a family history of oesophageal cancer. I tend to have a sensitive stomach as it is. I can only take Ranitidine and not Omperazole. There are other side effects that really bother me too, such as microfractures. I am thinking of asking them to allow me to go free for six months then do a DEXA scan to see if I'm in trouble, as it takes about three months for osteoporosis to start. Has anyone gone for just diet, supplementation and good weights exercise instead?

Biopsy - what's that like?

I may seem like a whining ninny but it's early days and I'm stressed out from going from being normal to potentially having my life stopped in the space of 24hours. Having nearly been killed by cancer treatments because the docs didn't listen to me until it was nearly too late, makes me very nervous and it seems like, here we go again.

18 Replies

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  • I had a Temporal Biopsy in 2014 and it wasn't bad. Left hospital same day.

  • I had a Temporal Biopsy in August 2016. It was not bad at all. Left the hospital after about two hours, no pain. Good luck and stay strong!

  • "why are we all given the same dose regardless of size and age?"

    Because they give you what they assume will be an excess to combat the inflammation quickly - which is particularly important in GCA because of the risk to your sight if the blood supply to the optic nerve is impaired even partially. Then they titrate down to find the lowest dose that manages the symptoms. This is different for everyone because it depends on the activity of the autoimmune part of the illness which is what causes the giant cells to form. The pred doesn't affect that at all - all it does is manage the symptoms until the autoimmune part burns out and goes into remission. 40mg is actually the bottom end of the range for GCA, 60mg is a common starting dose and if there are visual symptoms 80 and even 100mg may be used. You might be able to titrate up in PMR - but it is taking something of a risk in GCA - vision can go from one day to the next.

    Ask for a dexascan immediately - if you have osteopenia/porosis now they can't blame the pred for it (and it is possible) but if your values are good it gives you a better chances of getting away with refusing AA. I took 4 tablets, got my dexascan result, discussed it with a different GP and we stopped it (the cracks in bisphosphonates were already being spoken about). My bone density has barely changed. I have a new rheumy who is fussing - after last weeks info she'll be damned lucky to get me on it unless my BD drops a LONG way! Heron is the diet expert for bone density. She'll be along when she gets up (Canada).

    Cut carbs drastically and you may find you can avoid weight gain - lots of us have. It also reduces the risk of developing steroid induced diabetes. Other side effects vary a lot - there are over 80 listed, no-one gets them all, many get next to none. I have the latter now - it wasn't always so but that is another story. Don't get your question about fluid control? Pred CAN cause a bit of fluid retention but in my experience, it is carbs and salt in the diet that lead to retaining fluid when on pred. I drink gallons - fluid retention is minimal.

    GCA is a serious systemic vasculitis - don't underestimate it.

    Why a haematologist? They'll know even less than most GPs about GCA!

  • Ah, because of my three weekly cyclical neutropaenia. My neutrophils drop then my bone marrow works overtime causing bone pain. Then I go back to normal for a week before it slides again. Omeprazole it seems can cause this to worsen thus making my counts potentially dangerously low. With Pred as well might be bad. I would have thought a wee word with them by the Rheumatologist would have been adviseable. I had to explain explain my condition to the doc which didn't boost my confidence in them.

  • Oh yes, forgot the omeprazole. I've never taken it. Neither have quite a few on the forums for various reasons - mostly the side effects were too unpleasant. Many of us make do with yoghurt (seems to work) or, in the UK only, you tell your GP you want enteric coated which IS available if you need it and ISN'T more expensive than ordinary pred plus the PPI. I'll provide the figures if you want.

    GPs are often fixated on it because the reps told them it was sooooooo much better than ranitidine/Zantac. No it isn't - maybe marginally better but not so much most people would notice. And it can have horrible side effects.

    Doesn't surprise me you had to explain anything - even the GCA...

  • Hi again,

    As you say, everybody's experience is different, so you are likely to get many answers.

    From my own experience, and knowledge over the last six years of GCA and almost as long on this forum.

    Usual starting dose for GCA is between 40-60mg, some, like me with a late diagnosis start higher. (80mg in my case, but had already lost sight in one eye, and doctors worried about other!). So I do think doctors take each case as indivual as they can, but they have to give you a high enough dose to get the inflammation caused by GCA under control quickly. If they tried a lower dose, then that may not be enough to protect your sight- obviously the main concern with GCA, but by no means the only factor.

    Usual procedure in then to stay on the initial dose for anything between 2 weeks to a month. Longer the better really, it can take some time for the Pred to gain control of the inflammation in the case of GCA particularly. That may depend on how quickly it was diagnosed, and therefore how severe the damage caused.

    The underlying GCA cannot be cured (it usually goes into remission, but that can take between 2-5 years), however, the inflammation caused by it can be controlled by Pred. At the moment it is the only drug that can do that, no NSAID can touch it!

    After the initial month or so, you start to reduce with the aim of getting to a lower dose that is still enough to control things. If you reduce too quickly you are liable to go past that dose, and that means the inflammation can flare up again. It's a very fine balancing act.

    You should request a DEXA scan before you take any drugs, you may not need it, lots don't. But you should have been prescribed VitD & Calcium -Adcal usually.

    You can help with diet, cut out refined carbs, eat plenty of veg, bit careful with fruit, it can be quite sweet. Anti-inflammatory foods and a good diet will certainly help, but you still need the Pred!

    It's recommended that Pred is taken in morning, but it does take a couple of hours to get into your system. If you feel it's better taken at night, then don't think that would be a problem, other than it might affect your sleep, most people find it does anyway.

    As you say, take advice, and then see what suits you best. It's a bit of trial and error to start with.

    Can't help with biopsy, wasn't deemed necessary in my case, but most people seem to say it's no great problem, just a little uncomfortable. Not always 100% accurate though!

    Will send a bit more info through on message, bit long winded!

  • You asked if anyone had dealt with potential bone thinning solely with diet, supplements and exercise, and the short answer is yes, and successfully. Be sure you get a source of Vitamin K2 as well as calcium and D3.

  • You couldn't have had any betteradvice than that from PMRpro and Dorsetlady. Their comments have been a great guideline for me. I am one of the lucky ones who have responded well to treatment - diagnosed with PMRGCA in 08-16, started at 40mg of pred and am now down to 7. Still working though sometimes find it tough

    So how we react varies enourmously but stay positive and listen to your own body and the advice here from those who have been through it

  • I can understand your concern and anxieties receiving the GCA diagnosis. I have GCA/ PMR. I was initially on 60 mg of Prednisone. In January 2016, My rheumatologist started me on monthly infusions of Actemra for the GCA. I was on the infusions for 10 months and stopped for possible GI side effects. I just started back on the Actemra ths month after a GCA flare up. I am on Prednisone 30 mg now, and slowly reducing the dosage as the Actemra kicks in. This is a drug that has been used for adults and children with acute rheumatoid arthritis. Actemra has now gone through clinical trials and will soon be approved by the FDA. Roche/Genentech is getting ready to launch this medication for GCA as soon as it is approved. I just wanted to share this info with you. It is on the horizon, and will hopefully be available to many people with GCA in the near future.

    In the meantime, encourage you to follow PMRpro and Dosett lady's great advice. GCA is a difficult illness to balance. Treat yourself kindly and gently as you begin this journey. We are here to support you. 😍🦋

  • I am now 3 to 4 weeks into diagnosis of polymyalgia and on 15 mg pred. I think I am feeling slightly better but not amazingly so. I certainly could not cope with my 2 day a week job at present.

    My question is that my neck glands feel swollen and enlarged and when I crawled to funeral yesterday (98 year old and I at 67 felt at least 99.... ) I found I couldn't sing, my jaw hurt too much. Also slight sinus pressure. Reading your posts on GCA should I be worried / do something ?

    Like everyone else I was slim fit and healthy one day running around at full speed.......then wham. Life is what happens to you when you are busy making other plans ..........

  • Hi Daisyroo. Sorry to hear you have been diagnosed with PMR. If you want a quick answer to your question you might be better off starting your own thread, with a heading about your neck glands, because this is at the bottom of a thread on GCA meds. You just click on Home and then top right green box "write a post". Lots of knowledgeable people on here who will respond quickly, I am sure. x

  • Hi daisyroo,

    You should be feeling considerably better, not 100% but certainly about 70%, so think it would be sensible for you to speak with GP, did he diagnose PMR? Emphasise the fact that your neck, jaw, sinuses are troubling you and you are concerned it may be GCA. You need to convey that time is important, particularly to the receptionist if getting an appointment is difficult.

    It may not be GCA, but to put your mind at rest get it checked.

    Good luck, please keep us informed.

  • Yes he diagnosed PMR promptly and I was taking 15 pred that evening. He sees me again after more blood tests next week. I gather I wrote this in the wrong place .... just wanted to know how bad the neck/ jaw symptoms need to be before I take action or am I just panicking unnecessarily. However your advice is sound and I will try phoning Gp. Btw it was the totally inappropriate receptionist who originally told me what she thought I had .... and she was spot on! Rofl.

  • No place is a wrong place to ask a question. .

    I think what SusyTe was saying is, if you initiate a post, then everyone is notified, whereas if you reply to someone else's post, then unless you are the originator, or have ticked the box to follow that post not everybody is notified authomatically. If you just reply to someone else's post, your query may be missed by lots of people. Hope that makes sense!

    I wasn't being rude about receptionists per se, but some can be a bit difficult to get through - good on her!

  • If after 3 weeks into 15mg of pred there are questions to be asked. Either your 15mg dose is not enough to control the inflammation so at least 20mg should be tried to see if you get a better result or it possibly isn't PMR. You should have at least a 70% global improvement in symptoms in response to an adequate dose of pred if it is PMR.

    However - being unable to sing was something that happened to me, as well as jaw claudication when chewing and those should be considered typical GCA symptoms in a patient who has been diagnosed with PMR. If it is - that would probably account for 15mg not working very well.

    I think you need to go back to the doctor.

  • Thank you. I shall call Gp in the morning and try to get a message through to him. Everyone on this forum is very helpful an supportive.

  • Hi - sorry you have had such an awful blow with GCA out of the blue. Most people are started on 60mg so it could be your doc has started you on 40 because you are small. And maybe you could be taking more in these first days. I'm assuming the rheumy will want to see you again shortly to see how the symptoms are responding. You do sound stressed out - take it a day at a time for now!

  • Nose dived is EXACTLY the way to describe it. Don't give up and stay on the steroids. Nothing else works and GCA is too dangerous to risk

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