[Ali3]

Hi,
Ive been having a flare for the past five weeks and only last week was put back on 10mg Prednisolone to calm things down. I had only just weaned off the drug, and had a week clear before the flare started.
I went to the Lupus Clinic on Thursday and it was agreed that i would try again without the prednisolone to see what happens. So yesterday i took the last 10mg tab and this evening things are flaring....well i think so !
The symptoms all seem to be returning, but would this really happen after not having the Prednisolone for 1 day ?
Im also taking plaquenil every day but have never come off that.
I have sores in my mouth returning, my skin is flaring up...and all the usual muscular aches etc. Heartburn has been a real issue with this flare as well....is this quite common ?
Sorry for wingeing on....im just a tad fed up and don't seem to be on top of this flare (?)....
Ali x:worried:

 

[x_claire_x]

HI Ali, you seem to be coming off them quite quickly, my rheumy has been slowly bringing me down over months and slowly but surely I am able to manage on lower dosages at the moment... if you are flaring everytime you come down time for a rethink, have you contacted your rheumy to let them know what is going on? Think it might be a good idea.. take care of yourself hope you feel better soon.
Claire X

 

[x_claire_x]

ps... if heartburn doesn't improve then it may be a good idea to get yourself checked out, just to ensure all is ok. :worried:

 

[ATS]

i agree, maybe the drop in prednisone happened too fast. maybe discuss this with your doctor. ? i get awful heartburn sometimes too, especially when i get sores in my mouth (not sure if they're related), definitely discuss it with your doctor.

 

[Pink Pearl]

I suggest you talk to your rheumy and clarify that you were to drop the 10 mgs without a taper. I could not do it that way. I've tried...no can do. My rheumy wants slower tapers which he finds are more successful at being able to keep the levels down.
I wish you well in surviving this challenge.
Sally

 

[Maia]

I believe you were only on 10mg prednisone for about 1 week... in that case many will just drop it if you've only been on it for a short spell. And absolutely you can notice an increase in symptoms after being off prednisone for just 1 day!

If you can manage the pain in some other way... and hold off the prednisone for a few weeks... then you may find the symptoms becoming more manageable. There is often a rebound in symptoms from cutting off prednisone but it may be a shorter term issue (2 weeks or less) and not really a flare --- but just the body adjusting to either less prednisone or no prednisone. If the sypmtoms last longer than that, then it's most likely a flare instead of due to a change in the prednisone.

 

[ROSJAC]

I did Ok taking 10mg. twice daily on pred. Then Rhumy doubled the dose. I could not tolerate the higher dosage...heartburn was worse than flare. The others have given you great advice. Usually my rhumy suggest taking pred. for only 2 weeks, but when I must take it longer, he tapers the dosage. Best Wishes, Rosie

 

[Ali3]

Thankyou for the responses and advice.
I think tomorrow im going to have to start taking the Prednisolone again...but im not too sure what dosage ?
The Lupus Clinic just said to decide for myself...which is really difficult as im wasting so many days with this flare trying to sort out medication levels !!
I wish it was easier to know how to manage this better.
The heartburn did improve when i was on 10mg Prednisolone, didnt completely go away but tolerable. But it has returned since stopping the steroid and makes me feel lousy !
My biggest problem i have is weight lost with the Lupus.
I am currently 2 stone underweight and this flare hasn't helped !
I seem to take one step forward and two steps back !!
Ali

 

[Lily]

Hi Ali :hug:

What dosage of Plaquenil are you on right now?

love
Lily

 

[onetay]

Ali,
Pred is a fast working drug and for some yes it can make a difference in one day. We all adjust at difference speeds to meds and symptoms so your body will tell you when things are wrong. I have also found that it depends on how much you drink and go to the bathroom during the day. No one is the same and their body flushes things out differently also. I would tell them know at your next appointment that it seems that going off the pred at this time does not seem to be a good idea at this time as you have found out, this does not mean at a later time you can not try again. I hope that you feel better soon.

 

[Ali3]

Hi Lily...im on 200mg Plaquenil a day, but sometimes take another dose if needed ! I think that's the problem here...i don't know whether im coming or going with the dosage of these meds !
At the moment i really don't know what my body best needs....i think i might try 10mg Prednisolone for a few days, and then go down to maybe 5mg. I really don't know !!
Ali

 

[x_claire_x]

Hi Ali, that is still a bit up and down... I would chat with your rheumy as I would think you may be better upping your plaquenil to 400mgs a day.. I take mine both in the morning as was having gastric symptoms in the morning on waking up if I had taken it in the evening..still feel a bit yuk some mornings but much improved... it takes a long time for the plaquenil to kick in so might be better to increase dose to try and speed it up a little. I had a week at 40mgs pred three mths ago and am still coming down very slowly, sort of ok so far.. first cut to 30 for couple days, then 25, then 20 then 15mgs then alternate 15/10, then all 10s.. then alternate 10/7.5 then all 7.5s and then hit a wall tryin to get to 5... now on alternate 6/5 and will hopefully hit 5 by the weekend... so very slowly, each time waiting to see how my body feels and going by that. I am definitely able to do more and not get the 'payback' the next day or so, so somethings working!!!!..my gp is very supportive of my own taper as is the Rheumy... might be because I was a nurse in a previous life!!! I have found doing it myself helpful; its all very well these professionals giving you a sliding scale but you are the one feeling the results in your body.. you will get down I am sure, but give your body the chance to get settled as your pred use is a bit like a rollercoaster ride:rotfl: take your time and come down slow.... all the best, Claire X

 

[Ali3]

Thankyou Claire for your post.....it's very interesting to read how you are coping with your meds.
Im going to take, i think (!!) 10mg for this week of Pred and see how that goes....im still in flare mode and have energy for half a day then im pretty useless !!
Any magic remedies for heartburn....or do i need to be taking the Lansoprazole that the doctor prescribed a few weeks back !? I really don't like taking any more tablets than i absolutely have to !!
Ali x

 

[greenhaggis]

Ali,

Sorry to hear that youre really not feeling to good at the moment and hope the steroids help soon!

I suffer greatly with gastro issues and take omeprazole regularly, I would advise you to reconsider the ones that your GP prescribed. You could be doing more damaged to your body not taking them!!

Really confused as to why you would be on 200mg Plaq., then taking an extra 200mg when you feel you need it! As far as I'm aware Plaquenil is a slow acting medication, therefore taking an extra dose on just the odd day does not seem the right course of action! You should really consult your specialist and ask them whether you need to up Plaquenil to 300mg or indeed 400mg per day long term, maybe more beneficial. Alongside this perhaps you should be taking anti-inflammatories to help with any inflammation too!

I hope you get things sorted!

 

[Lily]

Hi Ali,

From memory your docs prescribed 400mg Plaquenil but you decided 200mg was enough? 400mg is generally considered the normal dosage to help peg the disease process back and you would start seeing some benefits after 3 months and even further benefits up to 9 months on that dosage. I'd take it. Being on long term Pred is not ideal and if you are on the proper dosage of Plaq then you may find you don't need Pred as often and maybe not at all once you have a good level of Plaq in your system. It's a far less worrysome drug than Pred in the long term that's for sure.

If your disease keeps progressing and you aren't taking 400mg then your docs may have to introduce other more potent meds. I'd be seeing how I cope on 400mg Plaq first, it's the better option :wink2:

love
Lily

 

[Ali3]

Hi lily...ok i will try the 400mg Plaquenil and see how it goes. Is it best to take it together or can i separate the dosage...200mg morning and 200mg afternoon ?
I need something to work here....im usually very upbeat but this is dragging me down just a tad !!
We all seem to put on a brave face with this illness....and that's hard to do at times !!
Ali x

 

[Lily]

Hi Ali,

If you are having or prone to tummy problems I would seperate the dose one am and one pm. When do you take the 200mg now? If it's at night and the twice day dosing doesn't work then try 400mg at night. That way you might sleep through any stomach problems. It's common for the first few weeks to have some tummy problems but they should go after that, once your body is used to the dose.

Everything crossed for you, it's such a long road to wellness or ímproved being' for us waiting for meds to kick in, but you will get there.

love
Lily

 

[x_claire_x]

Hi Ali, just a quick thought, if you are taking antacids make sure there is a four hour gap between those and the plaquenil as it can affect the absorption o plaq and make you nauseous..... I hope you are managing ok and that you have started increased dose of plaquenil, it is a slow acting med so taking the extra 200 ad hoc is pointless... you need to be consistant with the meds.. hope it goes well for you.:rotfl:
Claire X

 

[greenhaggis]

Hi Ali, just a quick thought, if you are taking antacids make sure there is a four hour gap between those and the plaquenil
Claire X

(((Claire))) - not having a dig at what you have said, as thats probably the advice you have been given from docs or medication instructions. I know you yourself have been in the mdical profession.

Ali,
Just to re-cap on the 4 hour wait - most stomach meds I have say 1-2 hours before or after other medication. If you speak to a GP and Pharmacist most of them will say that 1 hour in plenty sufficient!

Many times that I've been asn inpatient in hospital, the nursing staff themself issued stomach meds 1 hour either side of my other meds, on instruction from whatever Consultant was caring for me.

Not sure how anybody would cope with a 4 hour gap, if there taking meds every 3-4 hours anyway!