New to PMR, new to forum | Arthritis Information

Just diagnosed (finally!) last week, started prednisome (20mg) on Thursday. Immediate relief for Friday. Dr. wants me to take Pred before 8am, so the mornings since have been difficult until it kicks in, with the ibuprofin. By noon I'm moving pretty well. I'm very interested in the LDN therapy and look forward to having more information on it. I do not want to spend the next X years on prednisome!

I'm hoping to be down to 5mg soon, but if I'm still hurting on 20mg, how will that work? This is my last day on 20mg, and will reduce to 15 tomorrow. But I'm still hurting! I'm so confused and starting to get depressed.

This was rapid-onset for me. I do the treadmill daily, and Pilates 3/days/week usually. I've been off for 3 weeks now and I'm jonesing for some workout. Should I or not?

Glad you're here, friends, for us newbies.

Elizabeth

Hi Elizabeth,

Nice to meet you but not under these circumstances.

I was very lucky to have a Dr. who left it up to me on when I was ready to decrease and by how much. If you are in a lot of pain then it will be hard to decrease. I tried to go from 20 mg to 15 mg twice and with no luck. The next time I tried, I went from 20 to 17 1/2. It was a matter of trial and error. Depression is part of the disease so do not let it get a grip on you. Do not get the mindset that by decreasing quickly you will get rid of the poly as this is a falicy...compfort and quality is what you strive for and always keep your eye on the prize. This disease does go away so try to be patient. As for the exercise, that is a good thing but do not overdo it.

The lady who is on LDN is away right now so when she gets back she can fill you in on what is happening.

Take good care.

Pat

TeedOff2009-09-21 15:11:46

With the help of 20mg pred and 2 ibuprofin, I did make it to Pilates. It was wonderful! I feel well this afternoon, but stupid. Is that the prednisone?

Hi Elizabeth,

I am really concerned that you are already thinking about getting down to 5mg Pred. You have experienced the pain relief somewhat at 20mg and to think of going down even now oooouucchhh...

We are prescribed Pred because its the best drug to help with inflammation the Dr's have to offer at the moment. Yes there are issues, side effects ect .. but moving on, to get the pain stabilised and blood markers down, its all about getting quality of life!

One thing that works for me in the morning is to have Pred in bed with breakfast as early as my husband brings it x ( lucky me, he is an early riser). I then snuggle down and its so much easier when I get up a few hours later.

As for exercise I have mentioned that to Mickey. One day you can , the next you can't!

Depression, feeling miserable and in pain with a disease no one has ever heard of, also seems to come with PMR. I and others can sympathise with you. It takes patience and lots of TLC to look out for yourself now!

This is a great place to ask anything or to vent.

Hugs

Lyn

Just read your last post.... good for you feeling good and making it to Pilates. not sure what you mean about feeling stupid?

Maybe you are just pleased you have achieved something that makes you feel human again?

Hi Elizabeth

visit www.pmr-gca-northeast.org.uk website with loads of information.

Keep on coming back to this site as something new is always cropping up and someone, somewhere always can help

mrs Uk

mrs uk
I feel so stupid! I apparently have rapid-onset dyslexia, etc. Is it the Prednisone?

Thanks for your support, guys. I really appreciate having a place to vent. I try not to whine at home more than I have to.

Hi Elizabeth...
I was diagnosed in July, but have been on prednisone since May. My GP started me out at 60 mg! Finally got in to a Rheumatologist in July, who diagnosed me with PMR.

Something that has worked for me that was suggested on this forum as far as reducing the prednisone: taper every other day by 1 mg for a week and then go down to the lower dose for a week. For example, today I took 14 mg., tomorrow I'll take 15 mg., then 14 mg., then 15 mg. and so on for a week. The next week I'll take 14 mg. every day. The week after that I'll take 13 mg., then 14 mg. and so on. I stayed at 20 mg for more a month before I started this and had a really hard time getting below that. Take it slow! As others have said, quality of life is so important. Doing it this way I can teach 1/2 time and take my walks.

Another thing I do is take 1 mg of my prednisone dose after dinner. Before I started doing that, I was having quite a bit of breakthrough pain in the morning. Since I work mornings, this wasn't a good thing! I'm not a nap taker, but since the PMR and since I've been back to work, it has really helped me to take a nap in the afternoon.

Hang in there...

Jannie

Thanks, Jannie. I'm new to all this. My doctor suggested that I drop 5mg every 5 days. I dropped to 15mg on Tuesday and Wednesday I spent on the couch! But I've stayed with 15mg and today was much better, except for the stiffness and pain in the morning. I take my pred and some ibuprofin and feel pretty good by 10am, then I'm good to go for the rest of the day. I like your idea of a tiny bit before bed and that may well help me in the mornings. I'll talk with my doctor.

I'm pretty pleased with my doctor, because he had a quick diagnosis and subsequent tests have proven him right. He has not referred me to a rheumatologist as of yet, but it's just been a week. I think that he thinks he can do it himself, and perhaps he can. IF I can get down to 5mg, I can handle that indefinitely. It may take some time, however, to get that low. I can deal with the morning pain if I know it will be gone by 10. Actually, I handle the pain better than the fatigue. I'm an active person and the couch isn't my style.

Thanks for your support.

Mrs. UK - great info. Thank you.Hi again Elizabeth...
Oops! The amount of prednisone I take at night is 4 mg. of the total dose, NOT 1 mg.! Sorry for the mistake and hope you check back in here! I realized that this morning because I forgot to take it last night and it was a rough morning for me. I think what I will do is lay my prednisone out while I am making dinner. That way there will be no forgetting or double dosing...

Today was hard. Besides being in more pain, I am feeling really self-conscious of my moon face/neck. It's hard when I run in to someone I haven't seen in awhile and they do a double take and ask me what happened to my face! I did a google on prednisone and moon face and it looks like as we taper to below 10 mg., that side effect will go away. I hope so!

I've always been in really good shape, kayaking, hiking, horsebackriding. I can still ride my horse, as long as someone else lifts the saddle on and bridles him. I am so grateful for that! And I try to walk at least 20 minutes a day ( after my nap!)

Anyway, welcome to the forum and I wish you well.

Jannie
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