What to do next.

[Lanakay]

My cough seems better. I used the sinus rinse and took the antibiotics but on reading up on it I think raising the head of my bed and not eating a few hours before bed helped as much or more. Thank you for mentioning acid reflux. I didn’t know it could cause a cough.

I have been at 5mg of prednisone with quite a bit of pain. The antibiotic seemed to make it worse. I was barely able to get off the toilet. I had to pull in the sink and a doorknob to get up. I took it upon myself to raise the prednisone to 10mg for a couple days. My question is should I go right back to 5mg where I was before? I’m a little over two years into this and sure don’t want to do anything to make it last longer. I don’t know what I’d do without this site and all of you wonderful people.

[Yellowbluebell]

Yes you should be fine to just drop back to your old dose of 5mg but why would you want to go back to a dose which wasnt controlling your pain? What dose were you on when you had no pain? That is the dose you should be returning to. YBB

[Lanakay in reply to Yellowbluebell]

I hate to admit that I think it was 7 or 8mg when I last didn’t have pain. I have an appointment with my doctor Friday but I’m not sure he knows everything. I think most doctors don’t. At the rate I’m going I can barely cut my own toenails. I don’t say that as a joke to me it’s serious. I could cry sometimes about the things I can’t do.

[Hidden in reply to Lanakay]

7 or 8mg seems to have worked and 5mg doesn't. Why such a temptation to stick at 5mg? It's obviously not helping and eventually you will probably flare fully and end up back into double figures just to control the pain. I would be tempted to go 9 for a week, then 8mg until all settled or a minimum. If 4 to 6 weeks. I never moved south until I felt as good as at my highest dose. Pain and misery walk hand in hand. 🌻

[Lanakay in reply to Hidden]

Thank you so much. I just refilled my prescription. Doctors seem to be in such a hurry but they aren’t the ones hurting and trying to cut their toenails!🌞

[Hidden in reply to Lanakay]

Exactly. Don't rush. At 10 downwards its a low dose.

[Yellowbluebell in reply to Lanakay]

If i was in your position i would be staying on 10mg for a couple of weeks at least and then follow a very slow taper plan. It will make you cry and be down if you are not taking enough pred. It isnt a race and 10mg isnt that high. Both pmrpro and dorsetlady have taper plans you need to look at. You are not doing yourself any favours continuing to taper whilst in pain. You will end up taking a higher dose to get the inflammation under control putting you back even further. Slow down!YBB

[Lanakay in reply to Yellowbluebell]

I am going to slow down and accept that PMR isn’t done with me yet. Thank you😻

[Yellowbluebell in reply to Lanakay]

Much as we all want to be in charge Pmr has the upper hand in this. You will feel a lot better once you are on a dose that is controlling your symptoms. Good luckx

[confused2 in reply to Lanakay]

I know what it feels like to want to cry for the things you can't do. Felt that way this morning.

[PMRpro Ambassador]

There is no point going back to a dose that wasn't enough. And to be honest - if you are at 10 now and it was 7 or 8 where you last felt good then you shouldn't be aiming for 5mg yet.

You must tell the doctor this - and make sure he understands you got the symptoms back as you reduced the dose further. If it were me I would probably give it a week or so at 10 and see how you are doing and then drop no further than to 8mg if you are OK. And then give it a few weeks at least to make sure it is still OK.

You are looking for the lowest dose that gives you the same relief as the starting dose did. And all that happens if you try to force the dose down is that you will feel like this. The whole point of pred is to get relief from the symptoms - and you need enough.

[Lanakay in reply to PMRpro]

I have an appointment with my doctor Friday. He wants me to go down on prednisone but he isn’t the one hurting. (Or trying to get off the toilet). Whoever thought I would say that to anybody??? Gotta love it!🙀

[PMRpro Ambassador in reply to Lanakay]

I nearly pulled the washbasin off the wall in one house - they don't have a clue do they?

[Hidden in reply to Lanakay]

Oh, yes. The getting off the toilet. Is there a t- shirt for that? One time I had the thought, what if I’m stuck here? And one of my daughters had to cut my toenails. 😒

[Hidden in reply to Hidden]

YuliK takes her phone with her to the loo just incase!.....

[Hidden in reply to Hidden]

Fortunately with pred at correct level, that problem resolved. Phone still a good idea. 🤗

[Jackoh in reply to Hidden]

Makes sense to me!! 😜

[PMRpro Ambassador in reply to Hidden]

Short arm syndrome I used to call it!

[Hidden in reply to PMRpro]

That would complicate the situation. 😳. I’m long arms, short legs. Simian ? 😁

[PMRpro Ambassador in reply to Hidden]

Mine are normally long enough - just felt as if they weren't!

[Constance13 in reply to PMRpro]

Trouble is when you are away from home there is nothing to grab on in the toilets!

[PMRpro Ambassador in reply to Constance13]

That's what the disabled ones are for out of house. German-next to the front door-loos are fairly good for things to use ...

[Constance13 in reply to PMRpro]

True! Really meant when visiting friends!😂

[PMRpro Ambassador in reply to Constance13]

I have to say, my German friends have more useful bathrooms/toilets for standing up again than most I've met in the UK!

[Constance13 in reply to PMRpro]

Really? Perhaps I've chosen the wrong friends - or the wrong ILLNESS!!!

[PMRpro Ambassador in reply to PMRpro]

All have the just by the door guest loo - so small you can always reach the door handle if nothing else!!!!

[Constance13 in reply to Hidden]

She cut your toe nails while you were on the toilet?? Sorry, couldn't resist!😂😂

I was stuck on the toilet whilst visiting friends and I had to yell for help - most embarrassing!