Hand stiffness/swelling!

Hi Daniel. I've come down from 20mg to 12mg/day since middle of august, which is very fast I know. I am searching for my lowest level before a flare and I think I may have found it now. As I said above, My doctors are trying to create a flare in my hands to a certain extent to do further tests! My left hand is better than yesterday, but is still swollen and stiff so I may have found my lowest level, as it is rare for it to swell and is always much improved the next day......until now!

 

Hi. Thanks for that. I think I may have found my lowest level for the time being. Once the medics have carried out their further tests, I will return to the last level I was comfortable at for a while.

Hi Scotth. Thanks for the reply. I am not convinced it is anything but PMR tbh. This is the first swelling I have had with my joints and they are not hot or painful really. Just weak and stiff with some discomfort on certain movements. Thanks for the reply and good luck with the fight!

 

Hi Blockhead. I have to work every day with my hands too and understand your frustration. It may be Carpal Tunnel syndrome as you seem to be getting numbness and carpal tunnel is associated with numbness and tingling I think, but tbh...... it's probably the PMR! I don't get any numbness or tingling and different fingers are affected at different times. Good luck getting to the bottom of it!

I have some questions for you about the split dose you mention.

Did your Doctor direct this method for you ?

Was it done to allieviate break through pain/stiffness when it came close to time for the next dose ?

When you reduce how would you do it ?

Do you take the same dose at both times.

I am curious as my Dr is not much help. I don't have much faith in Dr but have no alternative so must remain in that office.

I have a fair bit of stiffness just prior to the time of taking my prednisone and have considered starting the split dose . Any advice is welcome. Thanks

 

Per my Dr., a dose no matter what level of MG is only good for a 12 hour period.

I currently take 9MG in the AM and 4MG in the PM

As directed by the Dr.

I’m to reduce 1 MG per week.

So for instance if I reduce the PM dose down to 3 MG and start waking up mornings feeling stiffness, I will need to go back to the 4 Same scinerio for day dosage. The goal is to be completely off of prednisone whereas I was told long term use can cause other problems and complications. Hope this helps.

It sure does.

?The GP never told me that the prednisone  was only good for a 12 hour period ; instead I was led to believe that it was good for 24 hours! talk about being ill-informed.

Now I only have more questions! I hope you don't mind.........

I am taking 12.5 mg daily. Do you think I should take 7.5 mg in the am(since I am busiest during the day) and then 5 mg in the evening ?

Also do you have any difficulty sleeping because of the prednisone ?

Do you get something similar to hot flashes since being on the prednisone ?

Thank-you for your patience and comments!

 

Yes hot flashes/sweats at night but as I lowered the night dose This had also decreased as well.

Ya day dose definetly should be higher. The highest I was at was 20MG once a day to initially zap the PMR so I could move and regain strength.

No - your GP was correct, the antiinflammatory effect of prednisolone/prednisolone lasts between 12 and 36 hours, depending on the person. That is why they are used in PMR so once daily dosing without a risk of overlaps is possible. Obviously in some people it only lasts about 12 hours but in others the effect lasts long enough for them to take double the dose or so on alternate days. Hydrocortisone only lasts a few hours, dexamethasone lasts up to 48 hours but because it is in the body all the time it can cause worse side effects because the body gets no rest from it.

It is something you should try IF you are finding a return of symptoms within the day. The majority of patients are able to take their dose once a day: as long as they are taking the right dose it deals with the entire inflammatory effect created each morning at 4.30am and no more is required until the next day and next lot of cytokines. You need enough to do that but that single dose is generally enough to clear out the inflammation and it works best taken all at once because it achieves a higher blood level. Some find it works best taking the single dose early in the morning, as soon after 4.30am as possible, then settling down for another couple of hours by which time it will have started to work - and had less to clear up than leaving it until later in the morning. Others take it late evening as they go to bed - and the inflammation never gets to get a hold. There is also a form of pred you take at 10pm, it is released at 2am and is at its peak at 4am, before the cytokines are shed in the body. But if it doesn't last 24 hours - try splitting but that is the only time it is recommended. If you have GCA it is not recommended at all as it reduces the antiinflammatory effect on the big batch of cytokines.

Whether it affects your sleep or not depends on the person - some can take it before bed and it makes no difference. Others can take it as early as they like in the morning and it still affects their sleep even though all the pred has left the body and only the effect is still lasting. As with so much of PMR - everyone is a bit different.

EileenH is exactly right.  As for splitting the dose of prednisone, I figured out after she had mentioned that in a long ago post, what worked for me by trial and error.  I take the smaller dose at night, usually half what I take during the day but the extra .5 mg as I reduce I take in the morning. So, for example, at 6.5 mg daily, I take half at night (the slow-release form Rayos is brand name in U.S.) i.e. 3mg at 10pm at night and then 3.5 mg prednisone in morning. That works well for me.  Rayos is very expensive for my insurance company ($9,000 for a one month supply) so I felt bad about that and tried to go off it but a flare started up so I had to go back to the above routine - it works for me. 

Hi Artfingers. My medics are aware of the dead slow approach, but want to produce a flare so that they can do further tests! I work with my hands every day too, so am not over the moon about it, but will go with it for the time being. Pred is one of the treatments for PMR apparently as it reduces the inflammation, but does not reduce the long term damage from RA as they believe certain other meds may do. I have had virtually no side effects from pred and will certainly not take methotrexate or the other medication that is sometimes the choice for RA. My joint discomfort in my hands moves around too! None of my other PMR issues seemed to be joint related. It only affected my muscles. Good luck with your continued withdrawal! 

Good luck with that Steve! My rheumatologist did the same to me at the beginning, and I was shuffling along like a 95 year old and couldn't dress myself. So be prepared for the worse but it soon passes. 

Pred is not ONE of the treatments for PMR - it is THE treatment for PMR. Low dose pred is also used for RA by some rheumies - there has been some discussion about it recently. There is a lot less joint damage in late onset RA - sometimes none at all.

Oh, I get it.  Ugh, "to produce a flare", that's why- not fun.  It's interesting to me how my pain moves around to different places - as an aside, I get so many physical therapy sessions a year free thru my insurance (35 I think) - trouble is they only focus on one area per 3 or 4 weeks and, alas, my PMR decides where it will go but they can't "follow the pain" like my massage therapist does. They have given me fun tips for dealing with it tho like a tennis ball used on a trigger point that have helped alot. I wish insurance companies didn't have their rules. I'd have the PT working on whatever area had the niggling pain that day instead of just my one shoulder!  Good luck Steve with narrowing down what you have exactly and keep us posted.  

Thank-you for your reply.

You have an amazing knowledge of the use of medication and terms of PMR.

I may try  splitting the dose as I don't seem to be able to get 24 hours without the stiffness and tenderness (not the searing pain I had before diagnosis) creeping in.

You are correct, we are all different and our bodies respond differently to both PMR and the medication to treat it.

Hi Eileen. Sorry, meant RA not PMR!