Hi, haven't posted in a while but still read all the posts every day & still reading every day and finding the posts & advice incredibly helpful. For a bit of background had PMR since 2020 & apart from severe pain before started taking pred. not really had any pain since. My knees always seem to be swollen but for the last week or so have been having really bad pain especially in my left knee. Struggle to get in/out of car, climb stairs etc. due to pain. When I go for a walk, the pain is horrendous for first 10 mins but I persevere and it usually becomes bearable enough to walk for over an hour, which is further than I walked before PMR! Have been on 5mg for a month (tapering) after taking 7.5mg for a month. Was fine on 5mg for 2 weeks..then pain took over. Have increased today to 10mg pred. Can't get through to rheumy,can't get GP appt for 3weeks then only phone consult. I have had a cold for about a week but doubt that should make any difference. I am having chemo for lymphoma since July,but that is al going well with very few side effects. Any help appreciated please about what I should do next. Thanks
very swollen and painfull knees: Hi, haven't... - PMRGCAuk
very swollen and painfull knees
I would be contacting the chemo people - they may be able to sort it out quickly - why wait for a GP consult?
Do you really mean that you jumped from 7.5mg straight to 5mg? If so I think that is rather a big leap. I would be going at 1mg a month or even 0.5mg. Maybe that is one of the reasons you feel worse?
Hi Seacat30. I agree that could be the problem. Had to reduce for biopsy and was told to get back to the dose I was on (5mg) quickly I decided to be more careful than that which is why I did a month at 7.5 (felt great) and then was planning on 5 for a month, felt great for 2 weeks. Now I have gone up to 10, I guess I should taper by 1mg. a month??
"Have been on 5mg for a month (tapering) after taking 7.5mg for a month"
Dropping from 7.5 to 5 is a 33% change in dose and we'd say is asking for trouble! I would say go back to 7.5mg for a while, it may help the knee pain or it may not but then drop NOT MORE THAN 1MG at a time. Having tried that you can regroup and sort things out.
The higher dose of pred may have been masking the pain of osteoarthritis so that needs to be considered. You could try Flexiseq - designed for OA in joints, especially knees. No contraindications as it isn't a drug
Just try one tube first - not cheap but if it works it is worth it - but buying in bulk via the Big A is cheaper if it does work.
Is the joint hot or red? If so, it may need treating as urgent and possibly even an emergency.
Hi, thanks for replying. Not red or hot. Checked for that in case of blood clot. I saw flexiseq mention a couple of weeks ago and was going to buy for husband with RA but couldn't find post again and forgot name. Will absolutely try that..Thanks.Will also follow your advice re tapering. How long should I stay on 10mg do you think?
It is always worth a try! If it doesn't help, no need to buy again!
This link give brief outline of dealing with a flare -but drop back down to 7.5mg NOT 5mg -and then follow PMRpro’s advice
healthunlocked.com/pmrgcauk...
Hi DorsetLady, read the link, Thankyou. Will follow that advice and continue as PMRpro suggested. Have sent my husband out to find Flexiseq and will start to use that straight away too. So much expertise and great advice on this site, so glad we have such helpful people to turn to ❤️
I agree with all being said here. The drop was too much too fast. I was never able to drop by 1 mg. At higher doses it was half a mg and lower doses a quarter of a mg. I also split the doses morning and night. It never worked for me to take Pred all at once in the morning. I understand the knee pain, I had it for 5 years and it's finally gone. Flexiseq worked for me, also a low dose of topical NSAID worked too. Sometimes, it's easy to increase the Pred thinking that it will work but we can't forget some of the topical pain relief that is localized with not as many side effects as Pred.
Hi kulina, tried the flexiseq yesterday..worked great for about 2 hours..will keep using cos I expect it to take a while before it starts working properly. Can only take paracetamol while on my chemo meds and they're not really very keen on me taking those. The 10mg hasn't made any difference yet, but will stay on it for a week and see how it goes..in the meantime will keep persevering with getting through to Rheumy!
Flexiseq - needs a while to work - so keep using……
I remain the eternal skeptic. How can Flexiseq enter inside the knee joint and lubricate it when it is only applied topically (as their website attests). Even a Durolane injection into the knee only works temporarily and, to my understanding from my orthopedic doctor, they have not come up with something yet that can create a permanent lubricant. Then if you are bone on bone, it usually means knee surgery depending on your specific situation. (As an aside, I'd go crazy waiting to be seen by NHS and all that. Thankfully here in U.S. I just book in and see a doctor (and hope my insurance covers most of it). I have my total knee replacement in two weeks, can't wait! Currently doing the pre-op physical therapy.
Flexiseq appears to work on the cartilage between the bones -not sure how, but it does.
I tried it on knee when I was first made aware of it, and it did nothing -as you say bone on bone (so no cartilage).
But have to say it does work on my shoulder - so I shall stick with it!
You are lucky - we have had loads of contributors from the US who are waiting months to see a rheumy, if indeed they have one locally at all.
versusarthritis.org/about-a...
It is a technology used a lot in cosmetics
"Nanosomes can easily penetrate the skin by topical application due to their small size. Because active ingredients get trapped inside them, the transportation of these actives is delivered more efficiently to the desired target cells."
dermascope.com/skin-care/11....
The proof of the pudding is in the eating - or in this case in the rubbing. It was compared with NSAID gels - but the USP here is it doesn't have any drug component.
Tried flexiseq this week for first time. Some slight improvement to start with, pain decreases for about 2 hrs then gradually returns. That feels quite promising as I wasn't expecting immediate relief..happy to give it a whirl for a couple of weeks..will update.Good luck with your knee replacement..hope it all goes well
Hi Poll - When you say the Macmillan Nurses are they the ones who look after you on the Ward when you have your Chemo or or just the general Helpline?
You should always contact the Ward with any questions - when l had my Chemo the Ward took over from my GP throughout Chemo & for Six Weeks following - my GP only issued my Routine Repeat Prescriptions.
You should be getting advice about your Pred Dose from the Hospital/Consultant - do they give you Dexamethasone when you have your Chemo? All this needs to be factored in as you don’t know what is really affecting your knees as it could be the Chemo…..
No question is too trivial for the Chemo Team - my knees were badly affected by Chemo & l live the long term consequences of that now (today being a particularly bad day)
You really must talk to the Chemo Team & see what they advise - they have an On Call Dr on the Ward each day & if you have issues they will see you.
Kind Regards & Best Wishes
MrsN 💐
PS have you tested that the cold is not Covid?
Our Mcmillan team are very short staffed and always mad busy. I rang my specialist nurse yesterday and left message on ansaphone. It is always ansaphone No reply yet.I rang the ward this morning, person who answered phone said they would transfer me..rang forever, no reply. Will try again now. Bring back the old days, when you could actually see a GP!! Thanks for your help and advice.
Good Luck on getting through - the Chemo l had has affected my shins & my knees; l used to have a heated pad which l found very soothing. They gave me a basic anti inflammatory gel & l was sitting down with regular tights on (15/20denier) and it looked like l was loosing all the skin from my knees but it was actually the gel 😂 peeling off!
P.S. Yes, done covid test Yesterday and today..negative
Always worth checking!
My husband got me the flexiseq and also bought me a heat pad..got plenty things to try out. Have my chemo in dedicated McMillan suite in local hospital. Doctors based at another hospital 15 miles away. Guess there must be a doctor on site but my contact numbers are all for the other hospital. Will look into that though. Thanks for the heads up.
I have PMR, and find that painful knees are my first and worst symtom. It's not a problem of the knee joints, they seem to be fine, the pain is at the back of the knees and up the back of the thighs. Quite extreme pain sometimes, and also weakness. When my knees are bad I rely on my good arms and shoulders to haul me up and down stairs.
I'm not sure that a lot of walking with sore knees is a good thing. I took a long mountain walk in early summer, and it took months for my knees to stop hurting and get back to normal. It wasn't a flare, the blood tests were normal, it was self inflicted damage! I'm not sure to what, to ?the muscles? the sinews? It was time and rest that healed them, eventually.
When we have PMR, it seems to take a long time for our muscles to recover, maybe your knees need rest rather than more Pred? Do you have access to a heated pool? Our local public baths haveone, I found it very soothing and helpful, just gentle exercises and slow swimming. Though recently they've lowered the temperature to save electricity, so it's not much help any more.
Not sure which is worse - here they have closed some pools to save on heating them in the winter which has put the mockers on the rheumliga aquafit classes held there. Mine are in a very big pool complex that hasn't been mentioned yet - it is at the bottom of the ski runs so I'm hoping it is used enough during the season to keep it open. If not, I may try to go to the next town - where they are in the hospital pool and the bus goes to the door - cheaper than using the car here actually as I already have my Mobicard!
Hi, my pain is definitely at the front of my knees and sometimes radiates up to my hips. My left knee in particular feels like the joints are clicking and moving around the knee cap area. Been trying to contact Rheumy for over a week to ask for X-ray..no reply! Our local hospital has a 40 week!!! wait for Xrays.I have quite a large dose of steroids every 2 weeks with my chemo and I started to put on weight. I started walking to keep my weight down. I am resting for a couple of days and walking 1 day at the moment. Today was a walking day hardly managed to do a circuit of the park..now resting my knees again. Our local pool closed at moment, guess it's to do with savings. Nearest other pool is open air..no thank you. These are the hazards of living in the country.
Cutting your carbs will probably d more for weight problems than trying to force yourself to walk with pain. Pain is a means for the body to protect itself ...
Put myself on strict diet when I started chemo. Salads, veg especially greens and fruit. Sweet potatoes twice a week. Chicken and fish..red meat one day a week..eating more each day than I've ever eaten but hopefully, the good stuff. Low potassium too since chemo..starting to hate bananas!!
The trouble is that with pred it's the carbs that count! And fruit and sweet potatoes have lots - and bananas have tons! There are actually lots of foods with a lot of potassium besides bananas
hsph.harvard.edu/nutritions...
and there are a lot with more potassium than bananas
healthline.com/nutrition/fo...
Kale, cabbage, avocados, broccoli and the dreaded spinach for potassium and fruit of choice is blueberries and I limit myself on other soft fruits. Was advised to eat oranges occasionally and the odd pear. My potassium is 3 which is extremely low..hospital and infusion if I can't get it under control. Have to weigh the good with the bad
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