I saw Rheumy last week and asked for a dexa scan but he said no (as did my GP previously) as it's not necessary. He said that the AA is to look after bone for the future. I told he I can't take it as it upsets my stomach. He suggested yearly injections on Zolendronate. I told him I'd like to look into this first.
When I checked it out it looks like it can give you flulike symptoms, aches in muscles and bone etc. Don't think I could take any more symptoms!
I'm thinking of paying private for the dexa scan.
Has anyone had Zolendronate?
He also wanted me to take Metatrexate and come off of the Pred (I'm on 15mg coated). I managed to persuade him to agree to me doing a slow reduction of Pred instead, but I won't be starting til after Christmas.
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Footfairy-1
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I would insist on dexa scan. The present can help you understand future potential. The gp and rheumy tried to strongarm me into AACID but didn't agree with me and I said I wanted scan before I had other "...dronic". My scan was fine and showed no problems. I just take calcium vitd3 supplement. Rheumy said I had to take AA otherwise I would end breaking bones like the woman who broke ankle and was previous patient. So much for patient confidentiality. Forum aunties etc. Helped me stand up to them. 🌻
If I remember correctly you haven't been taking pred for very long? Far too soon to be suggesting so-called steroid sparers which come with their own suite of side effects. That should be offered only if you have a great deal of difficulty tapering to the level the body produced naturally, about 8 mg, and in fact most people can get there without additional meds if they taper carefully and slowly. If you have had good relief from taking 15 mg I think you will probably be able to taper your first 5 mg, in 1 mg steps, quite easily. Ten mg is often a sticking point for us however, and that's when the dead slow taper or similar methods become invaluable. But of course we are all different so listen to what your body says!
I would never agree to taking any of the osteoporosis drugs without proof that I really needed them, the potential side effects are too serious, and it is possible to improve bone density without resorting to medication. I personally think that it amounts to malpractice for a doctor to prescribe such serious medication without checking that it's needed. And I'm constantly amazed that they think it's terrible to stay on a lowish dose of prednisone, which can be helping a patient a great deal, and yet blithely prescribe other medications which can have life altering serious side effects without even proof that they are needed.
I started at the beginning of July on 15mg but it never really got rid of all of my pain. But was still advised to reduce. Unfortunately in August I had to have my cat put to sleep and the pain etc etc increased again but I continued to reduce. The in Sept I had a double bereavement (sister in law then 20 hrs later her husband). Pain, CRP, etc all raised. So back up to 15mg. Then tried to reduce to 12.5 in October on GP instructions but in pain within hours so back on 15.
The pain has now gone. The fatigue has nearly gone,cos I'm taking things much slower.
This time I'm doing it my way (or should I say the way of this knowledgeable group) - sloooow.
I am so sorry for all you've gone through. The extra stress alone could have caused the disease to become more active (flare) even without the forced taper. I hope things go much better for you from now on.
I forgot to say that I told the Rheumy all this but he said that stress doesn't effect this PMR. Ha, what does he know! I gave up trying to convince him.
Hi Yogabonnie, I haven't asked but I know he the head consultant. He said my next appointment would be in 3months time, but I won't hold my breath!
That's a very tough period of stressful life events. Well done for even getting down a bit in dosage. It's amazing that given the number of people on this forum that report stress as potential precursor, drs don't always understand. If they don't understand they can't help much in the management of PMR.
I hope you have the strength left to argue for a scan. Good luck!!🌻
Oh dear God, where to begin with this man footfairy.?
How is he going to measure the effectiveness of this drug if he has no baseline?
If your bones are in good shape you don't need a drug with potentially horrible side effects. I was told that I had the bones of a 30 year old after my DEXA scan. They stopped pushing AA at me. I expect that all these drugs work in the same way.
I wonder if you could insist? Is there any Osteoporosis in your family? I had an early Menopause and my mum had Osteoporosis and those were two indicators for a DEXA scan.
As far as I know Methotrexate does not help you come off Pred. Pred is the only drug that's effective. I am glad you had ammunition to talk him round with. Keep up the good fight argh!
I have osteoporosis and this was only recognised when PMR diagnosed. AA did not agree with me and the Zolondronic infusion did replicate PMR pain plus a very strange out of body feeling that made me bedridden. Waiting now for Denosumab (spelling?) injection. Between the devil and the deep blue sea methinks. PMR is not life threatening but osteoporosis is known as the silent killer. Insist on a Dexa scan. Good luck it’s being powerless that adds to the stress.
Encouraged to see that you got good result (30 year old indeed) 😊 from your dexascan. I also had early menopause hurried along by chemo before I was 40. I'm patiently awaiting the result of my dexascan with fingers crossed because I also don't want to take AA.
Like you I have GCA and having had a Dexa Scan was found to have bad Osteoporosis and have a fractured vertebrae. Was prescribed Aledronic Acid right at the beginning (18 months ago) but it has been making me feel very dizzy so came off it. Saw leading expert on Osteoporosis at the Bath -Mineral Hospital last week and he is going to start me on Zolenondrate, yes he said 40 per cent of people might experience flu like symptoms in the first couple of weeks, but I think that's worth it compared to the weekly side effects of Aledronic Acid.
Hope this is helpful but like you slightly dread having any more bad days while still struggling with the symptoms of GCA which are miserable enough anyhow.
Hello Sho-Sho. Before you consider the infusions, you may like to try Ibandronic Acid Mylan, instead. 1 tablet a MONTH. I have had GCA for 12 years,have osteoporosis. I was also put on AA, which didn't agree with me at all, and I refused to continue with it.I haven't experienced any side effects with the Iban at all.
Thanks - I have, in fact been on Ibandronic for the last three months but apparently it is the least effective of the drugs, according to the Consultant.
Had GCA since 23/12/14-I've just come off first year's Zoledronic Acid (Zoledronate) infusion because it gave me 10 side effects out of the total 112 that are available. I had the flu like symptoms but they were minor and had gone in the three days. What I couldn't prepare for was the 24-hours amnesia where I completely lost it sitting in front of a gas fire in the lounge. Don't remember anything no medication and I take a lot, no food or drink, don't remember how I got into bed wearing the top half of my day clothing or why my trousers were in the bath. What was very scary was why my skin blistered and peeled off leaving me with raw flesh over both shins and went on and on. The treatment was iodine patches on my raw flesh which finally caused scabs to form.
The itching was horrendous and I admit to doing some scratching but not as much as my Rheumy accused me of. He referred me to a Dermatologist who recognised me as Klinefelters Syndrome sufferer and told me that I had rubbish Varicose veins and valves so now I'm in elastic stockings on both legs for the rest of my life. Which actually are quite comfortable.
My first Prolia (Denosumab) injection was done on 1st November and there will be 5 more over the next three years. So far no side effects that I can detect.
I'm a special case, because of the Klinefelters, I get a DexaScan every two years as a side effect of KS is osteoporosis and its done to check on my bones. I've got steroid induced osteoporosis as well because my doses weren't reduced quickly enough as my CRP readings were all over the place.. I couldn't take Alendronic Acid because I can't stand up straight having a curved spine and oesophagus so couldn't take the pills. I had to fight for the infusion. I'll stop there I don't regret coming of Zoledronic Acid.
I hope your infusion isn't anywhere as bad as mine.
They insisted on a DexaScan at the beginning of treatment with Prednisone. It showed my hips were good but back was osteopenia. That's before osteoporosis. Within 2 weeks of taking steroids the ability to remake bone is affected. I can't take any of those bi-phosphates as I already get spasms in my esophagus. My Rheum agreed to Evista (raloxifene) and I try to do weight bearing exercises. But, the muscle wasting caused by the Prednisone interferes often. I've stuck with a low carb (& low glycemic index) & low sodium diet since the start. This has lead to >30 pound weight loss. I was overweight.
Having trouble opening a jar or doing some other physically simple things always reminds me of the weakness of my muscles. The big side effect of raloxifene is blood clots. I stay hydrated, wear mild compression socks & am not sedentary. These are good preventative measures for blood clots. My husband has a genetic predisposition (factor V Leiden) to blood clots which was activated by a medication he was put on for another condition. So, raloxifene won't be for everyone. And with clotting, I have more of a problem with bleeding. With taking 80 mg Aspirin 2xs a day & the Prednisone I have bruising all over & bleed more than clot.
I had to buy new cloths for my weight loss. I held off as pinning the pants was working for a couple of sizes. When I finally held up some new pants to buy, I was shocked they were so long. I lost an inch in height! Physiatrist says that in the decade of the 60s one losses 1/2 inch and in the 70s 1 inch. I'm in the former age group.
Footfairy-1 I was prescribed alendronate and calcium for several years, much too the concern of my dentist. Now I would only take plenty of vit d3 if I could have my time again plus anti-inflammatory diet and loads of oily fish like sardines.
I was diagnosed eighteen months ago with GCA and GP said PMR also but Rheumy disagreed with that. I asked for a scan this year but was refused although Rheumy insisted I had a Zolendronate infusion last Dec. He is insisting I have another this year but I am refusing, I could not got through the side effects again - the most severe pain I have ever had and it shot from one hip to the other and down my left leg leaving with areas of pain that I had not had before. I hope you are able to make the right decision for you.
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Update AA and Dexa, and Dr Mackie
Adrenals or Heart?!!!
DEXA scan results and thanks to this forum. 
Alendronic Acid?
