PMR on to osteoarthritis.

[whitefishbay]

So I am trying to get my feet seen by my GP but first I have to have a blood test to check inflammation. From the phone call w a GP it sounded like there was nothing they can do for Osteoarthritis. The GP said buy some glucosamine & chondroitoin. Anyone have experience of taking these supplements and what strength? Do they help? Or is it to the scrapheap I go?

[DorsetLady PMRGCAuk volunteer]

Sorry but your GP is wrong, of course there are things they - and you - can do for osteoarthritis.

This leaflet from versusarthritis website gives details of treatments that can be prescribed as well as supplements that may help -

versusarthritis.org/media/1...

Also have a look at the site - good info - versusarthritis.org

[whitefishbay in reply to DorsetLady]

I knew he was wrong. Thanks so much. Will read w interest.

[Linny3 in reply to DorsetLady]

Thank you that was very helpful

[Frenchduck in reply to DorsetLady]

Thank you for this link. I wonder whether you or any of the other readers have heard of PIASCLEDINE. It is a gel tablet made of avocado and soya oil. It has undergone trials in France for many years and seems successful in alleviating arthritic pain associated with knee and hip joints. It also seems to promote new cartilage growth. My GP recommended it to me 2 years ago for knee pain and I bought it at the pharmacy. I never got round to using it as the pain went away.

[DorsetLady PMRGCAuk volunteer in reply to Frenchduck]

No, never heard of it - sorry.

[Frenchduck in reply to DorsetLady]

Maybe I should post it as a general question? It might be something people could ask their doctors/rheumatologists about. I can't comment personally on its effectiveness as I haven't tried it (yet) but I think things have been written about it on UK websites. Few side effects apparently.

[DorsetLady PMRGCAuk volunteer in reply to Frenchduck]

Might be worth a try....sure someone will have some info.

[whitefishbay in reply to Frenchduck]

Never heard of it.

[HeronNS]

What you should do is avoid using NSAIDs on a regular basis as they interfere with cartilage renewal. I suppose pred does too, but no point making things worse than they have to be! I have taken glucosamine for many years, 1000 mg twice a day (this is a larger dose than recommended on the bottle, a fellow sufferer told me to take more and it seems to have staved off the worst for decades. I do not take chondroitin as I am very wary of what it's made of having started my regimen when mad cow disease was very much in the news. Exercise to maintain range of motion and maintain muscle strength. You need those muscles to support the deteriorating joints.

[whitefishbay in reply to HeronNS]

I take one paracetamol most nights before bed for sore back...I will try not to in the future. Thanks for that.

[Floridafan in reply to whitefishbay]

Paracetamol isn’t a NSAID (Non-steroidal anti-inflammatory drug) so you can take that. Examples of NSAIDs are high dose Aspirin, Ibuprofen, Naproxen etc

[whitefishbay in reply to Floridafan]

Thanks for telling me paracetamol is not an nsaid. Phew.

[HeronNS in reply to whitefishbay]

Yes, your low dose of acetaminophen should cause no problems. I think if people are taking a maximum "safe" dose for a long time they do run the risk of effects on the liver but in general it's a well-tolerated medication.

[PMRpro Ambassador in reply to whitefishbay]

Just be careful not to take more than the max daily dose and check other remedies for having paracetamol in them - because it all mounts up if you aren't careful.

[piglette]

What an amazing thing for your GP to say. I don’t understand the comment at all. Regarding the glucosamine & chondroitin, I have been taking it for years, I slipped a disc about thirty years ago and thought it would help the fact that it kept slipping out and causing pain. In fact it did work although I am not sure what it does for osteoporosis.

[HeronNS in reply to piglette]

Osteoarthritis? It's supposed to help preserve cartilage. When I started taking it, maybe thirty years ago, it was largely dismissed by the medical profession but I'm pretty sure research since then has shown glucosamine has some beneficial effect.

[PMRpro Ambassador in reply to piglette]

It hasn't really been shown to do anything for osteoPOROSIS except possibly in mice - osteoarthritis maybe,

[123mossie]

I would be cautious about using supplements unless they’re backed up by evidence. I believe there’s no definite proof they’re beneficial. Expensive too.

[whitefishbay in reply to 123mossie]

I hate taking all the pills in the day as it is.

[HeronNS in reply to 123mossie]

There is some evidence that glucosamine sulphate is effective. Depends on one's expectations. It's not a painkiller as such and I think some people expect it to be. What is does is over time is help to preserve cartilage.

[whitefishbay in reply to HeronNS]

Thanks. That has got to help. Basically, I need new feet.

[HeronNS in reply to whitefishbay]

I hear ya!

[HeronNS in reply to whitefishbay]

Which reminds me. I have OA in my feet and have astonished more than one doctor looking at my feet and and blurting out why don't I have the bunions operated on and then when they see how much mobility I have in my toes immediately shutting up!

[whitefishbay]

I am a bit bionic myself with cataract surgery, heart surgery c 1971 for hole in the heart (patched up), etc. Modern medicine is a marvel really and if my heart hadn't been patched back in the day I'm not sure I would be here now. Shame my GP surgery has too many negative doctors in the practice. I'm not that old and I am going to keep going in whatever shape I am in. This forum really saves the day for me. Camaraderie and excellent advice.

[Pixix]

I was referred by my gp to Rheumatology for several reasons...one of which is OA (osteoarthritis). She was able to help with the OA more than other ’stuff’! She referred me to orthotics dept with my feet because the pain in my big toe joints is so bad I walk on the sides of my feet & I have trouble with plantar fasciitis. I had both these things before PMR started. I saw the rheumy within 10 days of referral & orthotics one week later. They have made ‘casts’ of my feet & are making individual orthotics for me to help me walk better. I’ve also been referred to another depts with helps for my hands & wrists...also OA. She reviewed my pain relief, increased one item, & suggested I taper the Pred a little slower than I have been. To me, it seems there’s more help out there for OA than PMR or fibromyalgia (though the consultant gave me their new leafy on that & I haven’t read it yet!) I’m 64 years old, OA started late 50’s & I was having steroid injections before covid & PMR struck. Sorry this is long but I hope it helps! FYI...I asked if I could buy extra orthotics for my shoes & she said yes, but they cost over £100 a pair. You do get given two pairs, but obviously move them around! I’ve been asked to take my most frequently used shoes to the fitting!! Hope you get success...& yes, I’m getting face to face appointments. I’ve been shielding for 13 months & wasn’t keen to go but needed to...when I arrived at orthotics yesterday 2 men in waiting room with masks, but both underneath their nose...on way out 1 woman...you guessed it..pointless wearing them! I asked the orthotist, it’s regular...no wonder we can’t control covid!! My Dad has bad arthritis & took glucosamine with chondroitin, but he said it made no difference. I currently take nearly 30 pills a day (which includes magnesium, calcium, Vit D, Vit C, & Co-Q10) & would like to decrease that ‘load’ before I try anything else!

[whitefishbay in reply to Pixix]

Yes, I think orthotics will help. I am down to 1 mg pred which is fine. Every time I cut it in half I start to ache (maybe it is psychological) but I am stiff and ache daily but not too bad. Got to keep moving. Thanks for the reply.

[ParsnipSoup]

I have been taking Prednisolone since 2019 for PMR with good effect and had tapered to 4mg from 15mg. I developed severe joint pains last year, I couldn’t see my Rheumatologist as he was unwell with Covid. Eventually I had a face to face appointment with another Consultant who said I had Osteoarthritis and Preds wouldn’t help. Eventually I spoke to my GP, he said to remember I still had PMR and whatever dose of Prednisolone we are taking we still have PMR it only means that dose is only controlling the inflammation. He encouraged me to go back to the start dose of 15mg , what a relief to not be in constant agonising pain. I am slowly tapering . Sometimes we have to realise Preds are our friend and not the enemy. I do get a slight return of joint pains when I reduce the Preds but it doesn’t flare up and settles down quite quickly. I am not saying Preds are a treatment for OA but it helped me if indeed the diagnosis was correct.

My Rheumatologist is still unable to work due to Long Covid , it has been a year now, poor man.

[whitefishbay in reply to ParsnipSoup]

Thanks. Your poor GP. Long covid awful.

[PMRpro Ambassador in reply to ParsnipSoup]

Clone that GP and send a copy to every GP practice ...

[Topps]

I have taken Glucosamine on and off for about 12 years. I need to as my knees hurt without it. Do try the treatment it does seem to help many people

[whitefishbay in reply to Topps]

Thanks Topps.

[HeronNS in reply to whitefishbay]

There's a fair amount of literature on the internet now. I found this just now:

ncbi.nlm.nih.gov/pmc/articl...

[HeronNS in reply to whitefishbay]

I've heard people complain that glucosamine upsets their stomach. I've never had that problem, but it is available in a couple of forms. I've always taken the one which is a capsule, not a hard tablet or caplet, and happily always at mealtime, so this may be why it's never caused me gastric discomfort.

[HeronNS in reply to Topps]

I believe glucosamine sulphate has helped me stay as mobile and painfree as I am, considering how widespread the OA is in my body. My recent knee problems were triggered by soft tissue injury and treating that has helped. The other knee shows worse OA in x-rays, and it is fine. I think that says something. I've been taking glucosamine since soon after diagnosis when I was 40, over thirty years ago. At first I took coated aspirin as my doctor told me to, but somehow I found out this was bad for cartilage and promptly stopped doing that. I don't know how I found out as this was long before we even owned a computer but it was certainly serendipitous for me. Probably a magazine or newspaper - old school! I think originally the opinion was that glucosamine didn't work because it's not really a painkiller, and it doesn't have immediate effects. But if what it does is help preserve cartilage and therefore joint health, then that's what we really need.

[AdoptMeow]

Research has proven that good quality glucosamine supplementation can help the joints, but many years ago research showed that oral chondroitin cannot be absorbed from the GI tract. Adding it to a product is just a marketing ploy.The primary effort to prevent/treat osteoporosis is getting the daily recommendations for calcium, magnesium, and vitamins D3 and K. Calcium in the form of carbonate is quite cheap to the manufacturer, but is not very well absorbed, especially is you are taking acid reduction medication (which interferes with the utilization of many mineral compounds that require an acidic environment for extraction).

[whitefishbay in reply to AdoptMeow]

Thanks AdoptMeow.

[MrsNails]

My Husband (and youngest son) both take Glucosamine & Chondroitin - choosing the strength is a bit of a nightmare 🥺 but MrT swears by them & James tried them plus Cod Liver Oil - he’s very tall & scrambles in n out of Aircraft Wings, he used to creak, so he tried them off his own bat, he then stopped them but his symptoms reappeared. I’ll catch up with him tomorrow or over the weekend & check what he takes now, l’ll let you know.....

I have considered them for my knees so l might ask DrD next time l speak to him.

[whitefishbay in reply to MrsNails]

That would be great to hear what your son suggests. Never sure what strength (I read 500 mg - more research by me needed). Thanks again Mrs Nails.

[MrsNails in reply to whitefishbay]

MrT gets his from Boots 3for2 & uses his Loyalty Card, he orders them OnLine as there’s never 3Boxes of the ones he wants in Store!

[whitefishbay in reply to MrsNails]

Good idea. I will do that too. Thanks again. Have a good day. Super windy in London.

[AdoptMeow]

Hi whitefishbay. I read through your questions again and started wondering about the pain in your feet and if there could be reasons in addition to OA? It seems odd that OA would only be in your feet. Is there swelling, numbness, prickling, or burning sensations? You mentioned a return of PMR symptoms at 1 or .5 mg. Are your feet better if you stay on a maintenance dose of 2 or 3 mg? Side effects are minor/negligible at that level and well worth the low risk to be able to walk without pain.

[whitefishbay in reply to AdoptMeow]

My feet are bony and no swelling. I do have a bone spur growing on top (intermediate Cunioforms). At first, I thought it was extensor tendonitis but my old podiatrist said no and it also aches where the foot meets the leg (the bend)(scientific term). This is why I want to go see my GP or any doctor just to get diagnosed so I can take the right steps. There is no swelling, numbness, prickling or burning sensations. I am on 1 mg per day. I have tried to take 2 and it makes no difference to the pain/stiffness. This is not acute pain although by the end of the day and 10K steps my feet do h u r t. I find my GPs not interested at all.

Once, pre C19 I went in to see my GP and to ask if I had arthritis in my knee which hurts on an off (stairs) and he just looked at me and said well at your age that is probably what it is. Then he said 'Is there anything else'. Didn't even look at my knee. Gotta laugh.

[AdoptMeow in reply to whitefishbay]

I was amused by the stab at a scientific term describing the bend. My first foster son came from Cambodia. The first time I took him to a buffet he ate an entire chicken. When I asked him what his favorite piece was, he said "the lap".

[whitefishbay in reply to AdoptMeow]

That made me laugh out loud. I needed that.

[AdoptMeow in reply to whitefishbay]

My mother could see a change in size of a bony lump on her knee and felt less pain when she took the bone health minerals and vitamins plus glucosamine and boswellia. And I have read of foot bone spurs improving with Cal-Mag.After being on pred for 2 1/2 years I have started having a sense of weakness at "the bend" all the way around below my ankles. Also sometimes feel like my feet are becoming "wooden" since I started leflunomide.

[whitefishbay in reply to AdoptMeow]

I walk down stairs first thing in the morning, holding on the rails to ease my feet, like the 1000-year-old woman. Obviously my (wooden) feet improve with movement. Thanks for the tip (s).

[PMRpro Ambassador]

I find the article from versusarthritis quite amusing

versusarthritis.org/about-a....

says "Overall, evidence from trials with a good study design in putting participants in treatment groups and trials that used the most suitable statistical methods had lower estimates of effectiveness of chondroitin, particularly in terms of reduction in joint pain."

which probably sums it up quite nicely!

[Abbview]

I have had the same condition in my left foot for over 6 months and have tried : Turmeric, Green Lipped Mussel capsules, Glucosomine for around 2/3months, but nothing seems to work and they are expensive. Exercise would seem to be the best route to take, but of course it is painful to even start exercising although persevering will bring results.

[Betty_H]

I don't know how your arthritis is going, but I'm 64 and have had OA for 33 years. I took glucosamine (1000mg) and chondroitin (1200mg) for six months way back when it started, and more recently have taken turmeric for inflammation. Neither one helped me. But I'm a tough cookie. I also have kidney failure, diabetes, PMR, Ehlers Danlos Syndrome, and a few less destructive things. I have so much metal in my body I set off all the detectors I go through. 10 orthopedic surgeries mostly for broken bones. As for acetaminophen, I take 3000 mg/day max. The absolute max is 4000 mg/day. With all I have wrong, I'm currently on hydrocodone and Zanaflex for my OA pain and muscle spasms it causes. Good luck with your ongoing problems. Just remember that OA gets worse as you age. Treat it as much as you can now. Don't put it off. Exercise when you can, but pain equals injury, so don't push it. Again, good luck.🙂

[whitefishbay in reply to Betty_H]

Wow, you must be a tough cookie. Good thing we never know what is around the corner. My feet (tops and tendons) and even my shins sore lately. What is that? OA? I keep moving but after a day of work and going up and down 4 flights of stairs I am ready to go to bed when I get home (mentally ready to pack it in). Then the icing on the cake was sudden severe hearing loss in one ear. I guess I can't complain. You get what you get. Hang in there.

[Betty_H]

No idea dear, but hang in there. There's always a light at the end of the tunnel, and sometimes it's not a train.

[whitefishbay in reply to Betty_H]

🤣🤣🤣