oh for the power of prednisolone and praquenil

well started the meds yesterday and have never known anything like it.. managed to work on a project for nearly 10 hours, no brain fog and motivated to get it done.. better still managed to go up and down stairs without feeling like id done 3 marathons.....

now I did have a little twitchy episode, but it passed, today been up and worked on the project again and then done a 2 - 10 shift.

I hate taking meds but I am so thankful for these 2, my life feels like its returning, maybe not 100%, but less pain and more energy = win for me, ppppppppffffffffffffffffffffttttt to lupus or post viral syndrome :) :)

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  • That will be the prednisolone, Scoobydoo. The plaquenil will take a while to start being effective.

    Can I ask a couple of steroid questions? I don't want to bring you down but the response you describe reminds me of my own first experience of steroids. But my initial dose was WAY too big and within a few days I had serious side effects ( which include, yes - joint pains in different places!) My questions are: What is your dose? and Did you get much sleep?

    Hope it goes on being good for you though!

  • Hi scoobydoo1

    So glad your feeling better. I know what you mean that initial reaction is fantastic, but you still need to pace yourself. Don't go overdoing it.

    Cheers!

  • Hi scoobydoo1

    I'm really pleased that you are feeling positive it is so important when you have such an illness, one thing I would say is that whilst on steroids it might be worth making sure you include plenty of calcium in your diet or asking your G.P./ consultant if your dose is high enough to need a calcium suppliment to avoid future problems. I don't wish to worry you but they can cause issues with bones.

    Keep on the upward curve ;-) and as kinnea says don't over do things as that could be detrimental to you.

  • I'm with you all the way on this one. I've been prescribed huge doses of steroids in the past-UV an oral- and I'm now really paying the consequences. I have developed something called Avascular Necrosis-all the joints in my legs have collapsed due to compromised blood supply. The bones have died and my femurs in both legs have collapsed. Don't get me wrong I really needed the steroids, there was no way around it, but my life has changed so much over the past three years. I realise now how much I took for granted being able to walk. I do however wish everybody well and realise that what's happened to me is a rare complication. I just think people need to tred with caution :-) xxx

  • Ooops just seen a typo-I meant IV steroids not UV - sorry

  • Clare you poor thing that sounds really rough what you are going through. I must admit that I never take walking for granted after spending quite some time in a wheelchair due to something totally unrelated which was what prompted me to say about the calcium. Like you I need the steroids but am aware of what damage they can do - I too have to have I.V. and oral treatment, keeping my weight in check is the issue I tend to have as when I am having both lots at once not only could I eat for England but I could eat enough for the British Isles! Then having mobility issues makes exercise difficult but I do what I can and have one very good exercise that my partner recommended to me.....if someone offers you food and you have already eaten move your head from side to side whilst saying no thank you. He is such a sympathetic soul. In actual fact he has been very good and our way of coping is have a giggle I cope with being bald that way, he spends ages shaving his head I get the look he strives for naturally. ;-)

    Chin up and take care

    Madmagz

  • Didn't I tell you that you'll feel like Superman? That's the steroids, amazing how they make you feel healthy and as if nothing can get in your way. Plaquenil will take around 6-8 weeks to kick in and if it works, you'll notice your mental focus and your fatigue improve, mine did. Enjoy feeling normal!

  • Hi scoobydoo, I am so glad for you, when I first went on Prednisalone (40mg) I had so much energy and re-decorated the entire house, I used to go for a walk at 5am for something to do as All the house was done. Frightened the hell out of my then two teenage children. They thought It was 'my last splurge' to get Everything done before I Died. That is how much it changed me, they had never seen me like that before, well I hadn't been since before they were born.

    PACE yourself, sadly this does NOT last, or carry on as you are for a while. It did make both me and the family happy for a while, Only YOU know how you feel.

    Get Plenty of Calcium, your doc. should give you a prescription (but if you pay as your pharmasist they migh be able to be bought cheaper).

    Good luck my friend which ever way you choose.xxx

  • I relate to that, I've done most of my spring cleaning and some for the past 3 weeks since I've been on steroids. I've come off them since and I'm feeling it, I miss that energy. Maybe I should do this each spring and autumn!

  • the plaq does not work for me. in fact it made me very ill. my pain mamangement dr wants to put me on gabapentin can anyone tell me what to expect. I hate all meds. the side effects usually outweigh the benefits some are literally poison particularly the anti depression tablets. the drs think I am depressed not ill

  • I take Gabapentin. I'm not convinced they actually do anything for me, but they work for plenty of other people. If I remember correctly, they're brilliant for nerve pain, they use it a lot to treat Neuropathic pain in diabetic patients. I once ran out of Gabapentin though over the weekend and boy did I know about it, I thought I was going to die I felt that it ill. I guess they put you on a steady withdrawal programme when the time comes to stop taking them. Good Luck xxx

  • I tried gabapentin and they didn`t do anything. so they gave me pregabalin. which I still find really good although I take 1000mg per day. but they do make a difference.

    loopy loo500

  • Yes I can only say the same as Tintin and purpletop. Enjoy it while it lasts but once side effects kick in with plaquenil after about 3 months you may notice side effects(may not) and I started to change moods etc so come off for while then hopefully try again. Its great to hear its working at the moment so enjoy xx

  • well im only on a 15 milligram reducing dose so not very large at all,in relation to the sleep question first night got to bed at 1 am, which for me is late as usually asleep for half eleven I am pacing myself and not taking it for granted that this will remain my energy level for a while, just happy that the mental fatigue, brain fog and the heaviness in the limbs and pain has been reduced, even if only for a little while. I think it may be a combination of having a good outcome from the rheumatologist appointment and the meds. any way only a short reply as now off out shopping :), have a good day all.

  • Steroids are a great first line of defense against a flare. Slow down! Your body is still struggling like it was before. The steroids mask that. If you push like you are doing, you will crash. Period. Return to your life in moderation. Take regular rest breaks.

    The plaquenil takes several months to get to an effective level in your bloodstream. The steroids give immediate relief but should not be taken over long periods of time. 90 days at 10 mg and you start to lose bone. There are other common side effects as well. For that reason, your rheumatologist will reduce the dose and wean you off the steroids as soon as it is reasonable.

    Our bodies make adrenalin. We always have some of it circulating in our blood. When we face stress or a threat, our bodies release more adrenalin. This is the hormone that gives people amazing physical strength in a crisis. Steroids are a synthetic form of this hormone. If you are on steroids for a long time, the adrenal glands can get lazy and even atrophy-another reason why you will be weaned off the 'roids.

    Listen to the voices of those of us who have 'been there, done that, got the T shirt' and slow down.

  • Hi Glad your feeling better but you must still take it easy i have been on steriods for over 20 years and i will never be able to come off them i have lupus, antiphoslipids, chronic obstructive airways , migraines, and now dibetic due to all the medication i am on but i have been told from hospital i am a very complex case and i will need them for the rest of my life, however i was so depressed and stressed because of the damage they do long term, Wait for it i am on 80mg/120 daily and as soon as i start to reduce i end up in hospital! The lowest i can normally go if i feel ok is 60mg but that is very rare now a days.

    Anyway Good luck keep well if you can xx

  • I am really ill at the moment but I try to limit the amount of meds. I read everything and do a lot of homework. this site has been invaluable thank god for it. I feel really ill mostly,very achy with deep muscle discomfort all the time. i keep twitching cant sleep well either. fatigued ,memory loss and I suppose depression makes me in the worst place a bit stuck

  • So happy thing are going well!! :) :)

  • I do appreciate what everyone has said, and daft as it sounds I am watching what im doing.

    sounds daft but throughout this flare ( nearly a year) I have been working 3 days a week, 30 hours, 2 12 hour shifts and an 8 hour on a very busy accident and emergency department, looking after the entire age range and spectrum of illnesses and injuries. I am not arrogant to not listen to advice, but like some very wise fellow lupies have said each persons lupus is their own and like I stated previously when im having a good spell im going to make the most of it :)

    thanks all, take care mark.

  • Well Done You...... like you, I try to make the most of the "good" days, and end up paying for it the next day. (No pleasure without pain...) That's easier for me, because I am retired from working now, so can rest at any time of day.

    You obviously enjoy your job, and have empathy with the people in your care. Are your work colleagues sympathetic? Are you able to rest if the symptoms "hit" while you are there?

  • thanks looby, have had a good little run and felt ok, can feel symptoms increasing again, rubbish really happened when I was on day off and resting, go figure that one out. as for work my colleagues are on the whole sympathetic and I love the job but I think I may be needing a move to non clinical soon until symptoms are controlled again. working nursing on a/e is hard, even if your not ill, there is no way I can stop and have a little rest if it gets bad. the pain and spasms are back but not the tiredness so its not as bad as previous, just sorted appointment for this afternoon with doctor for check up, take care, make.

  • see cant even spell own name now :)

  • Hi Scoobydoo.....I'm not sure if it is because of the moody weather we've been having, but I've had a really awful flare this week and feel like a wrung-out-rag now! Seeing Rheum Consultant tomorrow (she's squeezed me into her Clinic!) - so wish me luck!

    Hope you manage to negotiate a change of work environment, even if just temporary!

  • hi looby, good luck with rhumy. know how u feel, im not 100 % at all at the minute but I am better than I was prior to the pred and plaquenil. had a good talk to tony at halton and im to let them know how I am next week, if required may bring review foreward so things on the move. my short shifts start on Monday so im doing my shifts over 4 days rather than 2 and a half. mark.

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