Received great advice when I was first diagnosed in October 2015 and wonder if you can help me. I am currently on 3mg - tried 2.5 a few weeks ago and pain came flooding back. I recently moved and I am finding it difficult to get my new GP to prescribe pred in 1mg increments - as that means lots of pills - the first prescription I got less than 2 weeks supply as I pay for my drugs and this is very unfair. He finally gave in and gave me 2 months supply, but this was after 3 visits to the pharmacy and 3 to the surgery and this is the second time this has happened - I have no reassurances that this will not happen when I next have to get them. Does anyone else have this problem?
Also he is not keen to monitor me in any way other than he is trying to talk me into drugs for my bones which I have refused - this is not as a result of a bone scan, just as a result of a phone call about pred. Prior to diagnosis I was a very keen runner and very fit and active. I still do a lot of exercise (at a more sedate pace). I run, cycle, do body pump, Pilates and spin classes weekly. I take vitamin D supplements and I try to be outdoors as often as I can.
When I last had a Dexa scan - I was not advised of the results, but all was well. However, I was told that as I have had a total hysterectomy, am on steroids and am 57 my bones are being attacked from all angles. Do you think my exercise, outdoor activities and supplements are enough? The GP sort of scared me when he said that if I did not take them I will find out too late that I should have.
Appreciate any help and advice. Thanks
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Adnam57
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Then he'd better send you for a dexascan - to find out whether you need it BEFORE it is too late! But at this low a dose it isn't really likely that your bone density will fall much - mine didn't even at higher doses.
There is another lady on the forum who had a hysterectomy in her 30s (she was put on HRT), had GCA and high dose pred and in her mid 70s still had bone density that was 97% of a young person's she was told.
After less than 2 years it would be surprising if your PMR had gone into remission and it sounds as if your long term dose is 3mg.
Thanks for your reassurances - nice to hear that 3mg possibly will not effect my bones - but not so good to hear that it's likely to be long term - best try to find another GP if that is the case as not looking forward to a bi-monthly battle
No - wouldn't be my idea of fun, having a fight and making the appointment for 2 weeks time on the way out just to go through it all again.
It may not be that long - but if the symptoms returned at 2.5mg you aren't ready to go there yet - so you'll be on a low dose for at least a few months to come and the GP needs to get that in his head. This isn't something where the patient is on pred for a month and away to go - this is a chronic condition and they should know that.
If your DEXA scan was okay then there is probably no need to take Alendronic Acid - which is what I guess he's trying to get you on. The hysterectomy certainly makes you more susceptible to osteoporosis- I know, that's why I took AA, plus my mother also had osteoporosis so thought it wise.
You should have been prescribed VitD/Calcium supplement at the beginning - is that what you're taking? Most people find that plus good diet and exercise of enough to protect bones. I think your doctor may be scaremongering a bit!
As for the tablet size, you really do need 1mg once you're below 5mg - don't get his reasoning there! As you have to pay, have you got a prepaid prescription card - look on line. Works out cheaper.
Guess you went back up to 3mg. Your recent move and hassle with GP probably not helping, so give it another few weeks and try again. Are you using a slow plan rather than an overnight drop?
As you get lower your body needs all the help it can get, as each reduction becomes bigger in percentage terms than the previous one.
Even though you enjoy exercise, you do need to give your body/muscles time to recover - your PMR is still obviously active, so just be aware of overdoing things.
Your new GP seems to be adding a lot of stress to the mix. Any chance of changing him?
1 mg Pred should not pose a problem, I think I asked my pharmacist when I first started to taper and they broke my dose into 5s and 1s.
We have had a lot of discussion here on Alendronic Acid to stop bone regeneration and therefore protect against Osteoporosis temporarily as steroids make us prone to bone weakening. You are on such a tiny dose that the harm would be negligible and the benefit of a bone protecting drug pointless. They are serious drugs with horrible side effects not to be taken lightly. I would refuse unless a DEXA scan indicated that my bones were in trouble. I was also bullied by my GP about taking these drugs, my bone scan results showed above average bone density and I was able to refuse them, backed by my Rheumatologist. I was actually told that I could end up in a wheelchair upon no evidence at all. Your lifestyle and supplements are a great way to naturally protect your bones. Ask for a bone scan too though. As for your prescriptions, in my experience surgeries eventually get their heads round what you need, you just have to hold their hands for a bit.
I'm glad you said that about the GP - I thought the same - I will have to preserve with them I guess.. my pharmacist was even more unhelpful and refused to do anything as I had paid for the first prescription with only a 2 week supply. It is so nice to have reassurance - thanks
This is the UK we're talking about - you rarely get to see "your" rheumy if it is an emergency!
I have had gp and rheumy trying to bully.me into taking alendronic acid and at first I tried but got bad hip pain. The rheumy started telling me that the woman before me hadn't taken it and had broken ankle and had three pins in it (so much for patient confidentiality!). But the experiences and support I felt just reading about it here made me stand up to them and demand a scan before I even considered taking AA again.
I am56 and post menopausal so I supposed they feel like I should take it nice and early. But I will only take when necessary.
The putting patients on it blindly is bad enough - to leave them on it for more than 5 years is not good medicine. And the time scale nowadays is said to be under 3 years.
mmm. I presume they would. I am concerned about my sister who has been on AA for 3 plus years since diagnosed with another autoimmune disease but at least they do give her scan every 2 years.
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just opened letter i have scan on Friday morning. that's just over 6 weeks wait so in the general context of these things it's ok.
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