Flare not under control

[Sadie1024]

I was down to 5mg Prednisone. Had a flare due to knee injury. Went up to 10mg for 5 days with no relief in pain. Went to 15 mg for 5 more days and pain went down 90%. Went back to 10mg and was ok for 10 days and pain started back. Waited 3 more days and pain only got worse. Went back to 15mg, pain went away again by 90%. What should I do. I started 3 years ago on 20mg and worked my way down to 5mg. My knee is still in lots of pain, could that cause the inflammation to keep coming back?

[SnazzyD]

Ah yes, the goat incident. Is the pain all in your knee or in your shoulders or both? What sort of pain is it? It may be you need your knee examined; there may be some actual damage there.

[Sadie1024 in reply to SnazzyD]

My knee is getting fluid build up on it. I had it drained twice. My hips, shoulders and neck are all hurting. Just today I had to have help getting up out of my recliner. I have an appointment with my rhuemy Tuesday. He wants me to start on Methotrexate but I am not going to take it. I know I can get back to where I was without it. I just need the advise of the people on this forum that I trust as much or more than my Doctor. He is a good Rhumey but this forum is better.

[PMRpro Ambassador in reply to Sadie1024]

It COULD be because you are walking funny, favouring the dodgy knee, and that is putting strain on your back muscles so they are spasming to protect themselves - it isn't the PMR per se but a myofascial oain syndrome add-on problem. High dose pred will relieve that quite a bit as long as you take it but it doesn't deal with the underlying problem.

[Sadie1024 in reply to PMRpro]

What about the pain in my hips. 2 days ago my hips did not have a lot of pain, now I can hardly walk. I took 15mg at 2am this morning and I am going to take 5 mg a 2pm this afternoon. I am going to do this for 2 days and if it is PMR pain it should be nearly gone. Does that make any sense?

[PMRpro Ambassador in reply to Sadie1024]

It does - the goat episode could well have triggered a proper flare. But after 6 months - there is something going on that needs to be sorted out. And I'm far from sure that methotrexate is the answer - but who knows. The back muscle role can affect everything attached to them.

[Sadie1024 in reply to PMRpro]

I can get the pain to stop in all places with prednisone except the knee. But the pred dose is going to be 15 or 20mg. I don't want to go down that road again unless I have to. I have taken pred for over 3 years.Let me know if I may be correct. I think the knee is causing all my problems with PMR.

I also have terrible sciatica nerve pain caused by scar tissue from surgery on L5 and S1, it bothers me a lot.

I just want to get the PMR back under control without going back to 15 or 20mg every day and go down from there, but, I may have to. I will let the Doctor solve the knee problem but I need help from all of you to solve the PMR problem. I thank all of you in advance.

[SnazzyD in reply to Sadie1024]

Has the doc explained what the Methotrexate is for and why they think it is the best option?

[Sadie1024 in reply to SnazzyD]

Nothing that convinces me it will help. He says it will help the pred work better and will as also help the arthritis, but the side effects are not worth the try. Prednisone has enough side effects I dont need another.

[SnazzyD in reply to Sadie1024]

This might helpcreakyjoints.org/treatment/...

[Sadie1024 in reply to SnazzyD]

That looks good except I do not like the side effects of Mtx. I may try Hydroxchloriquine for the knee. It takes longer to work but it has less side effects, just a thought.

[PMRpro Ambassador in reply to Sadie1024]

Is that a theoretical don't like or have you actually tried mtx? Many of the listed adverse effects are dealt with by an adequate dose of folic acid.

[Sadie1024 in reply to PMRpro]

Theoretical, I have done lots of research but still not sure.

[SnazzyD in reply to Sadie1024]

It does depend on the person; I used to take people’s blood for MTX monitoring often. Most weren’t bothered much. At least it is something that can be stopped quickly if you don’t like it, unlike Pred that needs to be tapered off if you don’t like it.

[Sadie1024 in reply to SnazzyD]

Thar is good to know, thank you.

[PMRpro Ambassador in reply to SnazzyD]

Interesting.

[PMRpro Ambassador in reply to Sadie1024]

The pred dose may need to be high briefly to clear out the accumulated inflammation - but few people have to stay that high for long. However, it is perfectly possible that the mtx or leflunomide may get you to a lower dose if it isn't entirely PMR. I have no incentive to try them as I have no adverse effects from pred so I am But lots of people have no problems with it at all - the list is of every reported effect during trials, few people have them all.

[Sadie1024 in reply to PMRpro]

For the first 2.5 years I had no problem with pred except sleep. I kept my carbs down and I even lost 20 pounds. I just worry about the long term effects. I think I will try to clear out the Inflammation with 20mg for 3 days, 15mg for 5 days then go to 12.5 for 10 days then to 10 mg and then start the DSNS method. Does that sound like a good plan. Also I will have the Doctor take care of the knee. The knee may be the only problem I may have that will mess up my plan.

Does my plan look like it may work?

[PMRpro Ambassador in reply to Sadie1024]

It may well do - you have to try to find out. But really. don't panic about the time, Many of the so-called pred side effects can be caused by poorly managed PMR - I know, I had 5 years with no pred, I gained weight because I couldn't do anything - inactivity is a major risk factor or osteoporosis too. I craved carbs, especially in the afternoons - that stopped the day I started pred. I was depressed, moody, aggressive because I was isolated. I was dependent on being able to get out with the car and I hadn't realised how much my life had changed until I was told (wrongly) I shouldn't drive. I couldn't use public transport because I couldn't even get on a bus!

I eat low carb, no sign of diabetes. Nor cataracts, nor any real change in bone density even though I don't take alendronic acid. I lost weight while on pred at 10-15mg/day. Even the doctors admit it is all good.

[Sadie1024 in reply to PMRpro]

That sound good. I do need the excercise and I can't do any with the way I feel right now. I will try my plan and pray it works. Thank you so much. Have a great day.