Advice please. I’m down to 2 mg of Pred from starting on 15 mg in November 2021. I have managed tapering pretty well until now apart from occasional pains from inadvertently overdoing things. I was diagnosed with high blood pressure June 2022 and put on Amliodipine. I started then to experience water retention in legs but accepted it as minor problem when the medication was doing the trick on blood pressure. Since then at times, my knees have been sore but now they are really painful and and feel very tight and burning although I can still bend them ok. I think pain killers have some limited effect and also resting. My question is, could this be PMR flaring even though I never had pains in knees when I originally started with PMR. Wondering whether I should try upping pred. At the moment I am feeling quite anxious which I think is down to Adrenals so know to stick that out.
Thank you for your help.
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MrsPractical
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I’d get it looked at because it is clearly causing an issue and there are other problems that can occur from having chronic fluid retention in the legs. There are other causes which need to be ruled out.
That's exactly how mine are. I first noticed it when I could see the mark my socks left in my lower legs, when taking them off at night. A physio I saw last September said I see you have oedma in your legs. She was the only medical type person to say that. I spoke to a Dr last week about something else connected to PMR and pointed my legs out. She simply said that it was a side effect of Pred. I have pain at the back of my knees which I have told my rheumie but he dismissed it.
Hve you mentioned it to your doctor? Could be all sorts of things and asking for an x-ray might be a good start. Upping pred might help - but that won't prove it is PMR, just that it is something inflammatory.
So many people on amlodipine seem to have water retention in their feet and legs - I wonder why they persist in using it? It was never even mentioned to me.
Thanks for reply. I haven’t tried to contact doctor yet. Very difficult to get to see doctor at the moment because my husband is currently undergoing treatment for Acute Myleoid leukaemia and I am having to do a lot of running about for him. I think that is also exacerbating the knees. I had X-ray on one knee few years back which showed slight arthritis.
hi. Yes we do have econsult but that is even limited to how many they will deal with each day. The last two times I’ve tried I’ve ended up having to try to phone because they couldn’t help with symptoms I had given online. With my husband we had to go and wait at the surgery at 8 am to get on the list for triage that day. Fortunately he did get an appointment sent to him later that day. You can see why the doctors is not my first option.
That's not good.. it's become a nightmare for some.
Odd thing to say perhaps, but I'm grateful my hubby died before Covid [with his health issues it would have been awful, and he probably would have succumbed to it anyway] and that my GCA was over long before as well.
Fortunately I haven't needed to see GP in person since...
Similar problems with me, though I did see a real live Dr for the first time in 2 years recently. My friend, who seems to have a lot more luck than me, with her surgery says its a postcode lottery..
I remember when my mother was on blood pressure pills they caused water retention and swollen legs so she had to change to different medication. On a personal note when I was on Prednisolone my blood pressure was high and I had water retention so resorted to water pills but not every day. On a happier note once I stopped the Prednisolone my blood pressure went back to normal and no more water retention. All medication seems to have its own side effects sadly. Have been off Prednisolone for 8 months now and although have some pain in shoulders it’s manageable so good luck with the tapering.
Thank you. My blood pressure is also caused by Pred. My hope is that as I am able to exercise more and come off Pred I will be able to control blood pressure without medication too. Glad to hear your story. I would also be prepared to suffer some pain to be off Pred too.
I had a swollen knee because I injured it. The only things which helped were intermittent icing and elevation. Eventually I got some Flexiseq because in addition to the injury I had osteoarthritis in both knees and strangely enough within a short time (a couple of days???) the swelling, which had been present to greater or lesser degree for months, went down and has not recurred. However it sounds like your issue is related to something other than either OA or injury. Once you've found out the cause and are getting appropriate treatment you might still find that Flexiseq could be helpful. flexiseq.com/
I have been using flexisec on my hip joints for several years and have found it keeps my joints going. I did try putting some on the sides of my knees but it didn’t seem to have any effect. Thanks for reply.
In that case, it sound more like PMR -even though it’s different from original pains you had…maybe try an extra couple of mgs over weekend and see if that makes any difference. It is doesn’t you can easily drop back down to current dose.
Hi. I had amazing swollen ankles on Amlodipine! My GP added Indapamide to my daily dose and that seemed to solve the problem - a combination.
While racing to the bottom last year (I have learnt not a good idea) I had melting knees!! Particularly bad at night. I recognise this as adrenal insufficiency now. If you increase the Pred that will work but your object is to get off the Pred so 🤷♂️
Thank you for your reply. Very interesting about melting knees. Sounds very similar to mine. Yes it sounds as though that could be my problem as I do feel my adrenals are stuttering.
While I agree with others you should check out your water retention with your GP, i have had arthritis in my knees for years - even had a steroid injection in one 7 years ago. I started with PMR and Pred in Nov 2019, and am sure that the Pred masked the pain in my knees. Now that I have tapered to below 2, they are both really stiff and sore. Maybe that is your case too? Meanwhile thanks Heron for the Flexiseq recommendation - I hadn't heard of that before - will give it a go. I did start to take IMove (a joint support supplement) - but I developed a dreadful rash over my torso so think it might have been an allergic reaction to the Omega 3 from green lipped mussels!
Dont know if this is relevant but i hurt my knee just doing a bit if cycling on an exercise bike.
It was sore and swollen. My rheumatologist put a needle in and took out the fluid and injected some steroid. He was skilful and quick and the procedure it sounds much worse than it is. It was fine the next day and since.
I am about to make a full post about this but my experience sounds similar to yours and I have just been diagnosed with a sub-chondral insufficiency stress fracture and bone oedema, in other words a small fracture on the end of my femur underneath the cartilage which is apparently caused by a non-traumatic injury so not from hitting it or anything like that. I did play a little bit of gentle table-tennis just before it started which involved rocking back and forth on the knee but apparently steroids set the scene (eg bone oedema) and maybe I didn't take enough calcium. Anyway, it should show up on an xray and an MRI - I have had both but it did show on the Xray. I have been suffering with stiff knees for a year now but with a very very painful 'explosion' on the right knee last April 2022 which is when the fracture must have happened. Just might be worth checking. Also, I didn't say earlier but I reacted very badly to Amlopodine and even worse when they added Indiapamide when my legs literally felt as though they had been pumped up and were so painful I just stopped them. My blood pressure increased to 180/90 for a few days when I was taking it so not even lowering blood pressure. I probably need to try again with something else.
I had to get moved from Amlodipine to Ramapril because of the water retention, which did cure the problem, but not the painful knees. I am on 3mg pred and sometimes go higher in the hope of easing the knee pain. I try to do 10000 steps a day, usually walking the dog and the knees hurt from first to last step, but absolute agony if we stop for a coffee half way around! Just had to have a short synathen test as last cortisol test was dodgy, still awaiting results, not sure if this has a bearing on anything tho.
I am also on Amlodipine but my doctor has me on a small dosage of HCTC which is a diuretic. Has your physician given you a diuretic to take along with your Amlodipine?
I would keep taking the paracetamol at the stated dose through the day if it has given some relief and keep trying to contact the GP.It's common to get water retention at the knees and ankles on certain blood pressure medications and that can cause extreme discomfort , heat, and pain if you have any sort of arthritis in the joint. Most people either get a diuretic to help get rid of the water or if that doesn't work a change in BP meds.
There are tips to reduce the symptoms in the meantime.
Along with using Flexiseq or cool packs it is recommended to sit with your legs raised on a high stool when you are resting to help improve the circulation and drainage.
It can also help to raise your feet on pillows or raise the base of your bed to keep your legs elevated during the night.
Drinking more water each day can also help , it might sound counterproductive, but it helps improve the flow of blood and better circulation reduces water retention in the legs. It doesn't need to straight water , green or normal tea is good too.
You may not have had an injury but if you have been much busy on your feet looking after your husband lately that extra activity will have added to the pain , so try and have regular rests with your feet up between your jobs. Obviously, things like OA can actually be improved by weight bearing exercise like walking , swimming and bike exercises , but in your case it could be that you haven't really noticed just how much extra exercise and bending up and down that you have been doing since taking on caring activities so your knees could also be sore from muscle soreness and having a bit of a moan!
Water retention issues are also helped by changing to a low sodium diet , and increasing your intake of B vitamins, Folates and Magnesium which you can do quite easily with a combined vitamin supplement after a meal.
The best thing you can do is get it examined by the GP though , and request an x-ray , as if you haven't had one for some time you may find that the arthritis in one knee may have got worse or you may have some arthritis in the other or something else may need attention. These issues will feel more painful because their symptoms are not being masked by a higher steroid dose , can be helped by the tips above and from other members , and will not necessarily need for you to increase your steroid dose , which will be useful for you if your blood pressure issue is linked to taking your steroids in the first place.
Hope you get to see someone soon and that your husband's treatment goes well , take care , Bee
Interested to see your post I had exactly the same problem having been put on amlodopine for high blood pressure caused by pred. Still on 5mg but have come off amlodopine and problem with fluid retention and painful knees has cleared up. Now on perindopril for blood pressure.
Hi, I’m so sorry you’re having knee problems. Reading your post made me think. I’ve been on Amlodipine for 5 years just a year longer than pred and have noticed slight swelling of my ankles. I’m trying to taper to 1.5 mg daily from 2mg and my knees have also been very sore. It’s difficult to know if its a PMR flare up due to decreasing pred dose that’s causing the soreness part of aging process. I really hope you get answers from your Doctors. You’ve gone through a lot.
I decided to do an econsult as suggested by Dorset Lady. Despite explaining clearly that I felt the knee problem is connected to PMR/ Pred reduction or Amlodipine, I was sent an appointment for today. When I turned up, the appointment was with the physio. What a waste of time. He said he would refer me back for doctor appointment but I’ve heard nothing yet!
I will post again if and when I manage to see a gp.
Wouldn't it be nice if they actually LISTENED to what the patient says during their triage, I not there is a GP practice IRO Bristol UK that calls its receptionists Patient Coordinators. They ask why you need an appointment so "we can make the appointment with the most appropriate person". I think that requires AT LEAST ACP/ANP training ...
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Severe knee pain 
Diagnosed 3 weeks ago - depression + knee pain.
Painful knees
Knee pain.
side effects PMR., plus broken hip with pain hip Knee pain.
