prednisolone

jordan7j

Hi everyone, is anyone taking pred? I was put on 30mg on 5th Feb, to taper down slowly to 5mg. When I got down to 15mg I had pain and swelling back, so I called the nurses and they said to keep it at 15mg for now. My next appt is 16th April. At this does it does enable me to keep working, as although there is pain and swelling I can move around reasonably ok.
My concern is that I look like I am gettig another chin!! I am not thin, but not that large!! and worried about the weight gain etc. I know there is also problems with bone density too with pred.
My dilemma now is, do I carry on with the 15mg, or lower the dose, which will make it hard to work, (virtuall impossible really) due to the mobility side. Or hope that I dont get any more signs of weight gain and continue with the pred. Any help appreciated, love Jay x

valval

this a hard one and i not on it but think i would go for mobility as stiffness and pain will also cause weight gain

livinglegend

Hi, as you are reducing your dosage, then your body restarts making its own steroids which the original high dose suppressed. It has to get used to the lower dose over a period of time. You should get used to the reduced amount and in the end settle at your ideal level.

After it settles it is just a case of discussing with your Rheumy any future possible further reductions.

Joseph 8)

bubbles

Hi
Usually weight gain is from prolonged use, as in many many moons. Not sure if you have been on it before, or for any length of time in the past.
I was on in for a while and it did make me hungry all the time, which didn't help :roll:
Hopefully they will redice it and stop it in April, dependent on symptoms and results.
xx Bubbles

salamander

I've been on it for months and am having real difficulty getting it down as pain and swelling coming back. My consultant gave me a systemic jab and am reducing 1mg every two weeks. I've tackled the weight gain by going to weight watchers and have lost 10lbs. I've been told that if I cut pred down and still had pain and swelling that I'm more likely to have permanent joint damage.

As for bone density, you should be on daily calcium tabs (Adcal) with vit D and a once weekly tablet.

Although the side effects aren't very nice everything will get back to normal eventually.

janie68

Hi

I agree with Joseph on what he says, I've been where you are now. Your body stops producing cortisone when you are on pred, so when you reduce it, you feel it. Your body will start producing it agian but can take a few weeks. My advice is reduce slowly, but it's worth it as the side effects I have experienced have been horrible. It may be worth taking time off work while you reduce the pred if you can. Steroids are very good but only for short term.

Take care

Janie

breane

Hi,I must have been one of the lucky ones.I was on Pred last year for just over a month,starting at 40mg a day and then reducing down week by week until I was off them.After that I was almost painfree for about five months. Had no bad side effects with the steroids but loads of energy.However,since Christmas the pain and stiffness has returned but my consultant won't put me back on Pred instead gave me two steroid jabs,neither of which worked.I'm having physio at the moment as the OA and RA has caused muscle wastage in the shoulder/arms which is producing a lot of the pain and stiffness.Just wish I could have a quick fix of Pred but some consultants just won't re prescribe it. Breane.

kickyloo

Hi
I had trouble trying to reduce beyond 15mgs. Every time I tried I had another bad flare up and had to go back up to 20mgs and wait for some relief.
I'm now only on 2mgs and achieved this by reducing 1mg every week. It seemed that a slower reduction programme worked for me. Maybe it could help you?
Nicky

jordan7j

Thank you everyone, much appreciate your advice. At the moment my tablets are 5mg ones, can you get a 1mg pred? If so, then I can reduce more slowly, as reducing 5mg at a time give me lots of pain and swelling back..As for work its hard to have a break, as if I dont work then the parents cant work either, so cant really let them down. Thats probably why the injections never worked for me, as I couldnt have a couple of days to rest. I know I am not really helping myself, but I hoped that the pred would make it easier for me to continue to work. I will stay on the 15mg until I get seen again in April, and maybe ask them to help me to lower it. I went on the 30mg on 5th Feb, and after one week started on 20mg for two days, then 15mg which should have been for tw days then 10 for 2 and then 5mg on regular basis. Never got that far though!! Maybe if I did a less phjysical job it might be possible. Will see how it goes, by the way I am on the calcium pills, but not a separate one at once a week, didnt know about that. Jay x

livinglegend

jordan7j wrote:

At the moment my tablets are 5mg ones, can you get a 1mg pred? Jay x

You can't get a 1mg tablet, but they do have a 2.5mg size which could help you. I was on 7.5mg per day for about 5 years. I am now down to 5mg after 8 years.

Joseph 8)

jordan7j

Thanks Joseph, will discuss it with them in April. Take care

salamander

jordan7j wrote:

Thanks Joseph, will discuss it with them in April. Take care

You can get a 1mg tab. I've got them! You can also get soluble which means you can reduce much more gradually. I've got those too! Also, I've found that if I reduce 1mg every two weeks the pain and swelling is much less.


Sally

jordan7j

Hi Sally, thanks for that information. It will be much easier with the 1 mg, or soluable. At the moment even with the 15mg I have pain in my feet all day, and hands by the end of the day. Its probably due to the babies, and lifting and ;pushing double buggy etc. As I said previously, I had hoped the pred would allow me to work without pain, but that was only when on the 30mg. As soon as I reduced the pain and swelling was back. Have been advised not to work, but easier said than done really. Will get more of an idea when I go to the clinic next month.

salamander

hi Jordan, I don't know how quickly you are reducing them by? But I had real problems going down when I was dropping by 2.5mg dose. I got a system injection which has helped me drop down. My gp advised me to go much slower, if you keep putting them up and down your system doesn't know what is going on. I got very bad heartburn, even with a stomach protector, on the 1mg as they don't come enteric coated (why, I couldn't say) which is why I have the soluble. Much better.
good luck with it.
Sallyx

jordan7j

Hi Sally, I was meant to go down to 5mg after an initial 30mg for a week, then 25mg for 2 days, then 20mg for 2 days, then 15mg for 2 days then 10mg for 2 days then 5mg on regular basis.
I have never had them before, and havent gone up and down on the dose, just lowered to 15mg and was getting pain and swelling, so phoned the nurses and was told to stick at 15mg for now, but still get pain and swelling anyway.
I work full time with two babies ages almost 2yrs and 20mths. Its obviously very physical and tiring anyway, so that probably doesnt help.
I dont think that if I have to come off altogether or go onto 5mg I will be able to continue to work, as previously I was in alot of pain. Couldnt get upstairs without pulling myself up on the hand rail with both hands, not much use when you have little ones around.
I have been advised by my gp to stop working, and the rheumy just looks at me like I am crazy when I say I want to work!!

Thanks for advice Jay x

salamander

Blimey Jay, I am no doctor but that does seem like quite a speedy reduction. Initially, I was dropping down by 2.5 a week and was finding that difficult. Mind you, I've been on them much longer than you so maybe it takes longer to come off them. In theory, they should be able to keep you comfortable on steroids, or reasonably so, I would have thought. What you've got to be a bit careful about is doing damage to your joints. That was my main concern - could cope with the pain to some degree but didn't want to do permanent damage and I think the steroids prevent that happening. Please be careful in that regard. I was very keen to come off the pred due to side effects but my gp persuaded me to go a bit slower for above reasons.
Sally x

jordan7j

Hi Sally, I did think it was a very quick reduction too, having read posts before when people seemed to do it at a much slower pace. It was my gp who agreed to prescribe them after I had seen a private consultant, due to only being on mtx for 7 months with no benefit. He suggested doing the quick reduction.
I will see what they say next month, its hard to know whats for the best, obviously I dont want joint damage, but am worried about the pred. The rheumy nurse immediately said about pred "oh you dont want that" and didnt explain further. Also I think I had high expectations of it, assuming I would be able to work with no pain. I dont know what to do for the best, I want to continue to work, but at the same time, without being in pain constantly. Oh well, will just have to see what they say. Jay x

salamander

hi Jay, I can completely understand where you are coming from. One reassuring thing I was told was that any side effects from the steroids would go eventually. I was talking to my father last weekend about my mother being on them about 20 or so years ago. All the side effects went. My cousin is a nurse and she also said they would go and they are really very good in the short term (by that I mean months not weeks.)

Surely if the mtx isn't working they can offer you something else? Or is that what will be happening at your next appt? I would ring your rheumatologist and tell him the probs you are having. He might be able to make a suggestion over the phone - don't wait for your appointment if you are really suffering. Maybe you just need to give in to it for a bit and try and get some rest? I'm sure you will be able to work when your meds are right but is struggling on the right thing to do at the moment? I do know how frustrating it can be as am having problems too but am trying to be patient!
xx

jordan7j

Hi Sally, thanks for the help once again!! you have put my mind at rest telling me the sym ptoms go once you come off the pred. At the moment the 15mg isnt really working, so getting concerned about it.
I know taking a break is the sensible thing to do, but unfortunately its so hard when people rely on you so they can go to work. One mum who works full time has no one to help, and her sister in law has recently been very ill, so she is supporting her when she can, and needs to have Amelie cared for at the moment even more.
I think I may phone and see whether I can get any advice, I am not going to lower it any more at the moment thats for sure.
Was just reading another post on here, regarding pred, and problems with back pain and other swelling etc, so its not just me having problems at 15mg. The thing is I was made to feel that anything above 5mg was a high dose, and you mustnt be on it for more than a few weeks. This was from my gp, not the rheumy clinic. I am even tempted to go back to 20mg at the moment, as today my back is agony, my feet and ankles are swollen an very painful, the only thing not too bad is my hands today!! Thanks for all your help Sally, and everyone who responded, it really helps to know so many people who are so knowledgeabfle

salamander

Hi Jay, the only knowledge I have is my own experience! I've been on prednisilone since last August. Varying doses but anything lower than 7.5 is giving me problems, to be truthful I had problems on that dose. I'm sure you are not alone in needing to be on a higher dose but talk to your rheumy - he needs to know!!! Can't emphasize that enough.

As for the work thing, I am sure you feel bad about letting people down but you need to be well before you can start supporting others. People will find a way of coping if you stop working but they won't even begin to look until you do. Believe me, it's true. Look after yourself first and then you can look after others. Sorry to be boring about it but am concerned that you will make yourself worse.
xx

jordan7j

Salamander, hi, yes I know you're right, but I am very good at giving advice, but very seldom take it!! as Alice would say!!
I did get my bloods done today, and spoke to one of the nurses, he said to keep at the 15mg until my appt next month, and it can be reviewed.
At the moment I only have the 5mg pills, so would have to go to 10mg which i cant do as its too painful.
I am hoping it can be sorted, I think I expected so much from the pred, as when I was on the 30mg for the week it was amazing, no pain and very little swelling. When I began reducing I just assumed that it would stay the same, how dumb am I!!??

salamander

Yeah, I'm great at dishing out advice and not so good, either,at taking it myself.

Glad to hear you've talked to someone about it. I thought the same about reducing. It's not supposed to make you feel worse!
Let me know how you get on.
xx

annie_mial

I've always had problems with reducing; had to go up to 30 in January and had nothing but probs since. I invariably get a kick-back even if I try to reduce slowly. I do find sometimes that if I hang in there for a couple of days my body seems to readjust itself to the new lower dose, but it doesn't always work.

I've managed to get down to 17.5 but it has been a struggle. I'm hoping we get some warmer weather, that always helps me.

I start next week by alternating the dose between 17.5 and 15 every other day........if all goes well will stick to that for 10 days and then do 15/15/17.5 for 10 days.........then down to the 15......this is known as tapering off and at this stage generally works well for me (I'm hoping).

You can do this from the higher doses, but it does make the whole thing take longer. However, overall you are taking in less of the Pred, so that has to be an advantage right from the start.

Hope this helps
Annie

jordan7j

Thanks Annie, I am staying on the 15mg for now. Will also need to ask for a lower tablet as I only have the 5mg ones.
I didnt realise it would be so hard to reduce down.
Thanks for your help x