So...nearly 5 weeks has passed since I started on amitriptyline and I don't feel that it has been the magic pill to avoid heavier drugs. It has maybe marginally helped with the neuropathic symptoms and also when I'm up I'm able to stay up and keep going for a bit longer at a time (but again only marginally). Nothing that has made any marked difference in my day to day life.
On the strength of this I really want to push for hydroxy but then that raises the question of what I want from trying it...??
Of all the symptoms I have the only thing I really want to attack is the fatigue. I can cope with everything else, they don't bother me but if only I could get some relief from the constant fatigue I would be right. Just enough so that I can cook and clean and tidy up like a normal mum!
What are other people's experiences with starting hydroxy? Is it meant to help with fatigue? Or is there another drug that helps more with this? I don't want to ask for it if it's not likely to give me even half the result I'm after. Anyone's experiences will be much appreciated...
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1985mum
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I've found hydroxychloroquine helpful. I'm also wondering if you've had things like your thyroid and vitamin D tested. I was found to be very deficient. When it reached a sensible level the fatigue lifted a little.
Thanks for asking. My thyroid is fine. My vit d was very low initially but have been on supplements for more than a year now and the level is good but it hasn't made a stitch of difference to my fatigue.
Hi I take hydroxychloroquine and azathioprine now too as the hydroxochloroquine wasn't having much effect on its own. The pain and fatigue were my biggest problems and since starting this regime the fatigue has improved. I also started on morphine patches recently and have found that now the pain is better the fatigue has improved too. I also have 2 kids 10 months and 4 yrs and was finding it so hard to just do just washing up etc!
I have felt some improvement and can actually function bit better now. Ask to try the hydroxychloroquine as if it doesn't help the will just stop it X
I'm with everyone who has replied so far 👍👍👍👍. Here is a bit more detail:
In 2011 i started the lupus treatment process with daily hydroxy, which helped damp down my fatigue + joint & muscle pain enough to encourage me that my medics were on the right track
A few months later we added 20mg amitriptyline which slightly damped down neuropathic pain generally
2 or so years on we realised I needed more to help with flaring chronic neuro cerebral symptoms (including decades of constant debilitating fatigue) so we added 4 week 10mg pred tapers. These damped down everything including fatigue so effectively that we decided to try me on daily myco as well
Several years on daily mycophenolate cellcept seems to be the last addition to my combined therapy lupus meds. I'm told this is considered a therapeutic maintenance plan.
My feeling, after all this, is that although hydroxy helps a bit with fatigue, it needs to be combined with daily myco & low dose pred (am usually on 5mg or less daily now) in my case. As I understand it, combined therapy treatment plans like mine make for a good risk:benefit ratio because the meds involved can be kept fairly low dose
Thanks coco. It helps to see others experiences and get it all in perspective. Pred is a wonder pill for me (been there had that and felt good while I was on it even 10 years ago before any of this lupus stuff reared it's ugly head) but my doc will not consider it at all, especially long term, because of the osteoporosis.
I will go ahead and ask for hydroxy. See how we go.
My Osteoporosis etc is why rheumatology let me only have occasional pred tapers and then decided to try me on daily mycophenolate instead of going onto daily pred.
Only after I still needed pred for flares even while on myco, was I entrusted with taking low dose daily pred (below 7.5mg)
My impression is that this is a good example of trusting patient-consultant collaboration 😉
It's paying off for me, anyway (and I'm in treatment for the Osteoporosis meanwhile)
If eventually you become really desperate and want to take Prednisolone.
And you don't already have osteoporosis - here they can prescribe Alendronate sodium monohydrate 70mg. One pill a week. It doesn't actually prevent bone deterioration, its more along the line of maintaining what bones you have left. Might not work for everyone.
I'd taken pred for most of my life and did develop some mild osteo after about 15 years - but after a couple of years the Alendro I was actually cured of it. I am now considered a profound mutant and was asked to participate in a study.
Secretly - I believe being fat and doing a lot of 'unconscious ' weight baring exercise helped.
I've recently been taken off prednisolone as it was making me peculiar. (steroid delirium) And yes.... far less energy - and yes..... miss the buzz. I can go back on it if I want - ( I think my specialist thought delirium might be a natural resting state for me ) and tried - but the - emediate add on to my functional adrenal system was so 'amphetamine like' that I felt it might actually mask an underlying digestive problem I'm trying to get a diagnosis on.
Once i get to the bottom of the trouble with my innard's it's probable i'll 'break' and go back on it and be as strange as possible.
ps. Did a Doctor person test your adrenal system after you were taken off the pred ? If not - definitely make them do it.
I have heard of Alendronate. One to keep on mind. I was only on pred for 3 years when I had ITP so I seriously doubt the osteo was caused by the pred but rather genetic predisposition. My grandma had really bad osteo and she never had a single pill of pred in her life. And there are others in my family with it as well.
I know very well the delirium you're talking about😉I had that for the first few weeks when they whamed me straight on to a really high dose when I was first diagnosed.
I've had my ACTH tested sometime in the last year and it was normal so I'm guessing that means my adrenal function is healthy. But I didn't have it done when I came off pred nearly 8 years ago. I know my brother did when he came off it a couple of years ago but that was after 20 years or so. He had to taper very slowly.
What a big jungle we live in. Lupus jungle. So many things interconnected.
Just a thought, I was recently found to be deficient in vitamin B12, after the initial loading dose the fatigue that had been crippling me for years really improved. I am due for my next injection next week and I can really feel the fatigue returning.
I don't want to give you any false hope, but it might be worth checking out.
I can't take hydroxy, I had a bad reaction to it. I take Mycophenolate and Prednisone, along with lodene, Pregabalin and Cocodamol, for various types of pain.
Over the years I have found that there is sadly no magic pill, but there are things go that help a bit, don't ever give up, or let any doctor tell you that there is nothing that will help, if they say that, then you need to see another doctor.
Thanks creaky. My B12 is fine. Has been checked many times but I take a complex B vit supplement in the hopes that it discourages it from dropping if it's ever inclined to. Unfortunately my fatigue doesn't seem to be deficiency related as I've been tested and retested for every conceivable deficiency in the last 2 years. My vit d was down but is now normal with supplementation and the fatigue is still the same. I take extra magnesium just in case it will help even though my levels are fine.
Hopefully I can tolerate the hydroxy. Thankfully we can still get plaquenil in Aus so I can reduce the risk of bad side effects. But still, every one is different. Sorry rambling a bit here. Time for zzzz I think.😴
Gabapentin helped with all of my neuropathic symptoms. Also, helped with anxiety, nausea, headaches and more. I have also been on Plaquenil for about 2 months, but haven't noticed any differences from it yet (I hear it can take a while).
I'd say it's worth a try. Everyone will react to it differently, so you won't know it's benefits until you try. Plus, it has few side effects compared to other drugs used for lupus, and you don't need to monitor your bloods, just get regular eye checks.
I can only tell you that within 6 weeks of starting on 200mg a day Hydroxychloroquine tablet my energy level were almost back to normal - now after 5 or 6 months I gave forgotten about the fatigue. I am so grateful - I sleep better, the joint aches are better, my eyes are better and my scalp stopped itching in the first month. GO FOR IT.
Thanks. Yes unfortunately when dealing with medications there is the nasty things to watch out for. It's a matter of deciding if the benefits outweigh the risks.
I have found it really useful and when I was poorly five years ago and the dose was increased it helped even more. When I was first on it in the nineties I didn't really appreciate what a positive impact it can have. Now I feel is has done a lot to minimise my need for steroids (and no side effects in 20 years). If you have lupus or a related auto immune problem for which it is usually prescribed I would definitely ask for it to be considered.
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