Gca

[Stradbroke13]

Hi , I've been on prednisolone for suspected GCA ,started on 40mg .managed to taper down to 10mg ,although its caused my blood sugar to be higher & now have to take metformin . Anyway was happy got down to 10mg ,but pain is back ,saw rheumatologist today who says I have to go right back to 40mg again ,feel unhappy as thought if he increased it ,it would only be a bit ,but says I got to start from beginning again .also do all with GCA have to take alendronic acid .Thankyou in advance .Tracey

[HeronNS]

Do not accept a prescription for any bone density medication unless you have a DXA scan first to determine what your bone density is. Even if there is a recommendation you take medication it may not be necessary. I had a t-score of -2 (osteopenia or low bone mass, not as serious as osteoporosis) and because of additional risk factors including prednisone I was told I should take AA. By then I'd read enough to know there was no way I would ever take any of those meds. You can read the account of what I did. A year after the first scan a second one showed that I had improved my bone density to -1.6 and the recommendation for AA was dropped!

healthunlocked.com/pmrgcauk...

[DorsetLady PMRGCAuk volunteer]

Hi,

See you got your “diagnosis” of GCA three months ago - has GCA now been confirmed or not?

If so, then a reduction from 40mg to 10mg within that timescale is crazily fast - so no wonder you had problems. During the first 6 months with GCA you are very prone to flare if dose not enough - as you have found out.

As you’re back at 40mg what tapering plan have you been given? - sincerely hope it’s not the same as before otherwise the result is likely to be just as unsuccessful.

Personally I think you really need to be on initial dose for 4 weeks (although many tapers say only 2) - and then, provided no return of symptoms, reduce at 5mg a time (again preferably monthly) to 20mg, then by 2,5mg to 10mg. Even smaller drops after that.

My GCA lasted over 5 years and the average seems to be about 4 - so no rush to reduce if it is GCA.

As for A.A., have you had a DEXA scan to prove it’s required? If not, then request one. No point in taking medication if not required.But you should be in a VitaminD/Calcium supplement (prescribed) and we recommend Vit K2 to assist the absorption of the calcium.

[GOOD_GRIEF]

Alendronic acid isn't treating your GCA. It is intended to help you avoid osteopenia/osteoporosis that can be a side effect of pred, or treat osteopenia/osteoporosis already present.

There's a lot of controversy surrounding AA. Before you start taking it, you should have a Dexa scan to determine the current state of your bone density.

Many people find that taking calcium supplements (which you should be taking anyway of your on pred) along with vitamin D, changing their diet to include more sources of calcium, and making changes regarding exercise can build their bone density without AA. But it requires a serious commitment to be effective.

AA itself can have a number of undesirable side effects, some of them severe.

Only you can make the risk/reward decision.

[SheffieldJane]

The consequences of not treating GCA meticulously are really so serious that everything else has to take a back seat. I can understand your dismay however, you need to cultivate patience and acceptance - easier said than done, I know. Be safe! Side effects, for the most part, have solutions.

I agree with the advice about AA. It was still being pointlessly

pushed at me after an excellent DXA Scan result.

[Theziggy]

Were you diabetic previously?

[Stradbroke13 in reply to Theziggy]

Hi I was type 2 diabetic ,diet controlled but since prednisolone I'm having to take medication & monitor blood sugars .

[Theziggy in reply to Stradbroke13]

Snap - been diabetic for 12 years + diet and exercise but since pred BG levels seem to have increased - but no means of testing as the testing strips etc are no longer available on prescription for people not on insulin. Last visit with GP, he was mentioning the "M" word - and I have read too much about the side effects to even consider it.

Feb - very low carb!

[Stradbroke13 in reply to Theziggy]

Hi my gp gave me a monitor ,& I get strips regularly on prescription but they have put me on metformin twice a day .

[Jampad in reply to Theziggy]

I have been diagnosed with steroid induced diabetes. I`m not taking any drugs, just trying to cut out all added sugar and reduce carbs. I have been given a meter to test my blood sugar and more test strips too - all on prescription.

[PMRpro Ambassador]

Who encouraged you to reduce from 40 to 10 in such a short time? It was far too fast whatever problems you were having and so you really will need to go back and start over much more slowly.

[Rimmy in reply to PMRpro]

I sometimes feel exasperated reading certain posts here from people trying to get advice on 'appropriate' tapering. Too often it seems they are directed to make rapid reductions with the MO being getting people off Pred asap - sometimes almost as soon as they are 'on it' !! In this 'interconnected' day and age where peer-reviewed information is readily available - including recent treatment guidelines - I can only think some medicos never read anything 'new' or make very little attempt to stay informed. The consequences of this for many people who are yet to be diagnosed will NOT be good as we all know if things don't improve more quickly than they seem to be !

[Theziggy in reply to Rimmy]

My rheumatologist on my first appointment went - well the only description is - berserk and shouted you have to come off the steroids you are only young (if only!!!)

Second appointment when I was allowed to talk to him and shared what I had learned (mostly here), he said I was a very smart person and was doing it right - still on my taper after nearly 2 years - going from 12 to 11 again!

[PMRpro Ambassador in reply to Rimmy]

I, on the other hand, have just had a long discussion with my rheumy, I had returned to 15mg about 15 months ago for other medical reasons (cardiology weren't being very inventive!) but after having a pacemaker inserted I reduced to 11mg without problems - until a stressful situation messed it up a bit. The last 4 weeks have been something else - and even 15mg isn't cutting it, 17mg makes a massive difference. So I was told to stick with 17mg if that is what I need and we are working on other options. He is well aware I have been on pred for well over 10 years and struggle to get under 10mg. But QOL is the watchword.

[Stradbroke13 in reply to PMRpro]

It was my consultant that told me to reduce in that way ,said it was suspected Gca x

[PMRpro Ambassador in reply to Stradbroke13]

I would be seeking a change of rheumatologist. They obviously have no concept at all of the mechanism of the disease.

There is recent research that found there was still evidence of active disease in GCA even after 6 months at above 20mg - which is a typical and reasonable period on doses that high when governed by symptoms and patient response.

This approach

rcpe.ac.uk/sites/default/fi...

would start you at 60mg and take 4 months to get to to 20mg where you would remain another month. Then it would be another 3 months to get to 10mg. Doing this they reduced flare rates from 3 in 5 to 1 in 5 - I believe because they remain at a therapeutic dose during the most active stage of the disease. Then, once they get there, they stay on 10mg for a year as in their approach to PMR, taking their patients well past the 12-18 month period where flares are most likely.

ahajournals.org/doi/10.1161...

says "Our initial interest in neutrophils and GCA stemmed from the neutrophilia typically seen in patients using steroid therapy (Table). Persistent neutrophilia observed at 24 weeks (a time when most patients have achieved clinical remission) suggested existence of a subclinical vascular inflammatory state that might explain disease reemergence."

The cause of the GCA is still active even if you can't see evidence with the usual markers and if you take the pred away at that stage you will almost inevitably cause a flare in symptoms, requiring a return to higher doses. There is also at least anecdotal evidence that starting with a higher dose of pred results in a smoother taper process later. If flares are allowed to develop repeatedly it often results in a more difficult patient journey as well as overall a higher intake of pred. A rapid reduction may appear attractive - but it may well turn out to be a false friend.

[Rimmy in reply to PMRpro]

Interesting about neutrophils - I notice that in a 0.5mg taper to 10.5mg I induced a flare (not a major one but a 'flare' nevertheless) and my bloods concomitantly stated 'relative neutrophilia'. So I returned to 11mg where I have been for several weeks now but still have sore neck/shoulders and some increased fatigue and sweating. I am loathe (after 3 years and some bigger 'flares') to increase again from here as I feel I might just sit on this until it passes - which I think it is if 'slowly'- but my CRP was certainly 'up' from 3 to 6 last I checked. Still PMRpro your experience highlights how important it is to be realistic and if my inflammation level doesn't reduce in my next bloods I may convince myself to takes a couple of mgs more -despite the fact my weight will inevitably jump up again - like it has before around those 'higher' doses regardless of what I am or not eating - and I am so over all that !!!

[Hidden]

I am disgusted with your care. Yes the first couple of reductions might be significant jumps... If there are no symptoms. But to do this reduction in 3 months is incompetence on the Dr's part. Please insist on a slow taper, only when you have no symptoms. There are other meds to control blood sugar and a low carb diet will help.

[fmkkm]

Hi Tracey,

I have GCA, diagnosed 4 years ago January.

I also started on 40 mg prednisone. I found this forum in the beginning and took all the advice to heart. I started a very very slow but relentless taper and changed my diet. I am now down to 4mg and just lately feel a difference in my GCA, that it is truly lessening it’s hold. I am now moving to 3.5 with great caution. I have had blips where I had to double up for a couple days but I never had to go back up. You must go slow this time. You must change your diet.

I find with doctors, if you go in with confidence and tell them what you are doing and what level you are at they just let it roll. I have yet to have a doctor tell me how much prednisone to take, as long as I am making progress they seem fine.

Hope this helps, fm

Also, no I don’t take AA. I am going with natural methods.