Prednisone prednisolon prednisolone

[Pootje]

Hello Everyone!
I was a long time on vacation now i'm back and i've see my rehabilitation specialist.
He think a lot of pain come's from the inflammations.
And he want's to give me Prednisone for that.
But i don't wan't it because i'm scared for the reactions.

So my Question, has someone of you used Prednisone? and what are your reactions?
I hope you can help me with some life story's!

[jojackson]

Please note that this is entirely based on my own experience, rather than on any medical training.

I have been taking Prednisolone on and off since my mid-teens for life-threatening asthma, but since getting the diagnosis of Ehlers Danlos last year, I have noted with interest how my joints respond to being on/off the Pred.

At the high starting dose, I find that my joints do feel a bit better, but also a little bit wobbly, as though perhaps there is swelling there, but that it keeps the joints 'held together' a bit, so they feel unstable when the Pred starts to work to reduce the inflammation.

I don't imagine that your doctor would want to keep you on a high dose for any length of time, but I find that after a few weeks, I lose strength in my core and proximal muscles (particularly around hips and shoulders) - this is a common side-effect, and that my joint stability really suffers at that point. My physio and I work really hard on those muscle groups anyway, especially when I am on steroids, but it does feel like a bit of a losing battle after a while.

I would recommend having a really open discussion with your doctor about it. I don't want to sound like a complete killjoy about it - you may find that reducing your inflammation is really beneficial over a short course, and I would think it very unlikely that you would lose much muscle tone over that time, especially if you're aware of the risk and work on preventative exercises with your physio.

Oh, and I've just thought that lots of people with hypermobility have other coexisting connective tissue/inflammatory issues, which might be very much improved by steroids, in which case it would be very much worth a shot.

Good luck with whatever you decide, and if you do decide to try it, let us know how you get on. I'm sure that you won't be the only person for whom doctors suggest Prednisolone, in which case it would be very helpful to know your experiences.

Hugs, Jo

[Pootje]

Thank you Jo!!
I know that is your own story and i also know that medication work different on anybody!

But i learned somthing about your story!
Beceause about the muscles, my muscles are extremly weak at te moment!
I try really hard to get them stronger with my pfhysio. And i think we are on à good way!
So it's boring of i would take te pred and my muscles getting weaker and i can start over with my phfysio!
Also i think i get of that weak muscles again Inflamations!

So i've learned to ask Extensive about this!
Because i don't want that i Get extra problems after!

Thank you Jo

Hugs Pootje

[aninja]

Hi,

I also have a similar experience to Jo, although I have used prednisilone for a blood disorder(low platelets), which, again could be life threatening if not treated. Strangely, since my teens too, which is when joint pain and instability became more of an issue for me. So just maybe the 2 could be connected?

I do not have to take it all the time, I just have it as and when the platelets drop.

I WOULD NOT want to take long term as prednisolone has an adverse affect on collagen. I was told by a surgeon that steroid injections do not have the same affect on collagen as oral steroids, so it depends also on whether pain is widespread or locally in a few joints.

It is also linked to early onset osteoporosis in long term use, which we are likely to get anyway, so I personally wouldn't want to tempt fate!

I would also say that, it is your body, you know how you feel, not me, sometimes we feel like we would do ANYTHING to take away pain and that's your choice. Take a list of questions with you so that you can way up the pros and cons. If any of us say something that may concern you, ask your doctor - good ones don't mind. If I ever saw a doctor that did mind, I would get another doc!

Good luck, hope you pain is controlled soon.

aninja
xx

[Pootje]

I have had decided to do it not.
but THE last days it Goes verry verry bad!
I have pain everywere and it is horrible!!
THE pain is much harder than normal! And i'm à lot tired .
So i don't know it now,, 28th serptember i had to goe to my rehalibation specialist!
Than I going to ask al my questions....
I don't know it anymore....

[jojackson]

Aww Pootje, I'm so sorry to hear that your pain is so bad. You sound very miserable too - I hope that your rehabilitation consultant can answer your questions and offer some help and comfort.

Feel free to PM me if you would just like someone friendly to listen!

Hugs, Jo

[Pootje]

Thank you JoJackson!
That's fine that someone want to listen.
i still waiting to 28 september. it is almost the day..

[Finarda]

Has anyone had severe pain in their large limb joints, head and jaw after only one dose (mod edit - dosage information removed. Please read the site rules) of oral prednisone?

This happened to me last week when my asthma got bad. The pain came on about 6 hours after taking each tablet and was progressively worse between the first and second tablet. The pain felt like an excruciatingly tight band around the ends of the bone - different than my normal joint pain. The pain lessened after about 15 hours after I took each dose but has not gone away. If I stand up or lie on one side too much I get shooting pains in my hips.

I'm extremely sensitive to vasoconstrictors but otherwise don't know what would have caused this after only 1 dose. There is apparently a risk of bone death after long term use and I'm a little concerned that this may have begun to happen even though it seems so unlikely after just one dose.

Thanks for any thoughts.

[Eloise]

I am not sure about joint pain as a side-effect, it is not recorded as a known side-effect.

However, I can put your mind at rest that it has nothing to do with bone death. This is only extremely high doses long term. It prevents the uptake of calcium into the bones which causes oestoporosis, fractures etc. So if people need it long term over 6 months then DEXA scanning etc are needed. But on short courses there is no need.

[Finarda]

Thanks Eloise! So even if it (or the adrenal surges that I had) had had an extreme vasoconstrictive effect on the blood vessels in my bones it wouldn't have been enough to have damaged the bones?

As an aside I have to take a calcium channel blocker to stop me having Hemiplegic migraines as I have a genetic problem with my calcium channel controlling genes.

I've reacted very badly to vasoconstrictors in the past including triptans (heart) and DHE-45 (brain) - I have to even watch with decongestants, antihistamines and caffeine.

[Eloise]

I would say it is a blood supply issue to the tissue round the joints and nothing to do with the bones - bone pain is extremely unusual. It may even have something to do with stimulation of nerves and pain responses - as in the fight or flight response of heightened senses.

Also, calcium channel blockers have NOTHING to with calcium uptake in bones. Calcium levels in your blood and bone are related to each other. But calcium channel blockers affect the ion diffence on either side of membranes and have nothing to do with bodies actual calcium levels or function in bones. It just happens that the ion channel has a calcium molecule in it and hence it's name.

[Finarda]

Thanks again! I'm hoping it goes away quickly. I'm trying to keep my weight off my legs (the main pain is right above my knees and right below my hip joints - feels like a tight bank squeezing them, very similar to the way it felt when I took triptans, except, not my arm) so whether it's the bones or the tendons, ligaments, muscles etc, hopefully it will give them a chance to rest. It did feel like it could be nerve pain - it's sharp, burning and crushing.

I'm planning to meet with the pharmacist who is part of my doctors office (what a great idea for a medical practice!) and see if he can shed some light on what I should do in the future. My doctor is most concerned that with arthritis, Sjogrens, EDS, asthma, anaphalactic allergies etc, that not being able to take prednisone would be a bad thing.

[greige]

Any one use this meds? It seems working.. but I'm soooooo sleepy.. worse than when I was on amytriptiline

mod edit - Medrol is a brand name for Methylprednisolone, a variant of prednisolone