Muscles

[Margaret1951]

Hi all sorry not been on for a while even though I do read the posts. I got down to 4mg and tried my best for 2 weeks with no luck flare ups all over 😭😭 went back to 5mg and fine so back to 4.5mg for 2= weeks now. My muscles in thighs down to knees still bad and evidently disintegrating not a lot left and walk on a go slow, my doctor has put me back on Alendrolic acid tablets but naughty me not started them yet from November he prescribed. One a week for 3 years !!! 70mg now 8 years ago I took them regularly and it was something I read about them that I stopped them. Does anyone else still take these ??? End of this month I am going hospital for an injection in my left hip not looking forward to it at all as my joints are slowly closing with osteoarthritis. For the last 4 weeks my left hip/groin feels like my muscles are getting stuck down to my knee and cripples me when I stand up the pain is a killer, does anyone else get this ???? It’s only in my left leg which I don’t understand, sorry for the long explanation. 🙏

[Kendrew]

I am not the person to advise you medically, but I can tell you that I have been on Alendronic acid for 2years. I've been fine on it and I'm going for a Dexa scan soon to see how my osteoporosis is doing. I definitely wanted to avoid AA .....it's definitely not something you want to take if you don't need it, but unfortunately I do. Many different factors will determine how well each of us tolerate AA...... age, other health issues, medication, diet, exercise, etc, but I know at the moment, I seem to be ok on it. That may change, but in the meantime I'm ever aware of it's potential and toxic side effects.

[Margaret1951 in reply to Kendrew]

Thank you, I also have narrowing of an artery right inside my heart and a few other medical problems

[piglette]

I assume you have osteoporosis as you were on AA a while back? The groin pain sounds like osteoarthritis in your hip as you say. The trouble is it will not improve, if it is your hip. Are you having a steroid injection into the groin where they usually give a sedative or just a steroid injection into the hip area? You are very lucky you are able to get a steroid injection at the moment, in my area they no longer seem to be available because of Covid.

[Margaret1951 in reply to piglette]

Hi yes surgeon going to try injection right into hip joint ad said if it doesn’t work it will be a hip replacement which I don’t really want if I am honest.I still get appointments here they are very good even with the COVID ,I go for my test in 2 weeks before going in.

[PMRpro Ambassador in reply to Margaret1951]

Why not? Most people I know say they wish they'd had it done sooner.

[Margaret1951 in reply to PMRpro]

Simple, I am a big coward and don’t like hospitals since my mum died in one.

[Hosers2 in reply to Margaret1951]

I haven’t had a hip replacement, but did get my right knee replaced. I wish I had done it sooner. A friend of mine had both hips replaced (separate times)and he was walking without a cane within two weeks. He wore his hips and knees out because he was addicted to running (obsessively) when he was younger. He would definitely advise you to get it done.

[Margaret1951 in reply to Hosers2]

I am ready for anything now as bad pains 😭😭

[clover-4]

I have been taking Alendronic Acid for 5 months, with no apparent side effects whatsoever. My Dexa scan results were dreadful, so I'm just glad I can tolerate this drug. I do realise, though, that everyone is different.

[Margaret1951 in reply to clover-4]

Many thanks

[Estellemac]

I went for a Dexa scan and was taken off AA my bones were ok after 4 years. However I am crippled with arthritis now at 5mg can’t get down any further without all the pain like PMR but think it’s more AI now. Can’t walk far at all feet knees and hips hurt but I’ve already had a left THR. Not sure what to do next asking Rheumy for a referral back to Orthopaedics as GP think Ibruprofen and paracetamol work??

[Margaret1951 in reply to Estellemac]

Oh bless you, I can’t get below 4.5mg like yourself, I can’t take ibuprofen either and side effects of most pills. My doctor never knows what to give me, so taking my zapain which are good. Good luck x

[Estellemac in reply to Margaret1951]

Knowing I’m not alone is comforting but knowing someone else is suffering too is disturbing. Might not be a terminal illness but it’s totally debilitating and soul destroying if you let it. Im not letting it get to me. A good whinge to my self followed by a bit of meditation and I bring it back to what I have to be grateful for ❤️

[Margaret1951 in reply to Estellemac]

I curse every time I get up now as pain so bad, I hv my assessment this Wednesday so will also know my last results 🙏🙏

[Estellemac in reply to Margaret1951]

Please update when you can.

[Kaaswinkel]

Your explanation is perfectly fine. May I say as an ex physio, retired because of PMR, that your osteoarthritic left hip can cause severe lain getting up from sitting to standing, and yes, the pain often goes down fhe front of the thigh, towards the knee. Some people with oa never have hip or groin pain, the pain is all in the knee. I know I am not a doctor but it is often us, the physio s that initially diagnose an oa hip and then the xray confirms it.

[Margaret1951 in reply to Kaaswinkel]

Thank you very much for your reply, I have been telling myself it’s not my hip 😱 for fear of an operation . Have now accepted it due to being so bad now, so your answer helped me a lot thank you

[Ann1A]

Yes, I take 1 a week. Have done for 8 years or so. A few years ago I heard a report into research which said they could damage bone (the opposite of why I take them) so asked my doctor, who was a little dismissive. As nothing else negative has surfaced since I assume it's OK.

[PMRpro Ambassador in reply to Ann1A]

You take one a week of what?

If you mean alendronic acid, you are right and the doctor is wrong to be dismissive. Used over a very long time the bone that is formed may have sort of cracks in it - and that is weaker. The current advice is to not take them for more than 3 to 5 years without a drug holiday to reduce the risk of this happening.

[Ann1A in reply to PMRpro]

Yes, 1 a week of AA,. And thank you very much for the information, I'll be packing my bag and buying suntan lotion right away !

[PMRpro Ambassador in reply to Ann1A]

Better not tell Boris ... The suntan lotion is for the AA right?

[Ann1A in reply to PMRpro]

😉🤫🍹🌞👙🌴👣😎

[Margaret1951 in reply to PMRpro]

I am having assessment tomorrow up my hospital if I don’t see the surgeon tomorrow I will ask him end month when I have procedure as already on Desunin for my bones, thank you