Lupus and medication
I have put 9n a stone and half since starting hyd... - LUPUS UK
I have put 9n a stone and half since starting hydroxychloroquine🤔,anyone else gained weight,i want to stop taken it but i will see reumy
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Jeffscott69
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Hello jeffscott69
You've got some work to do yet to catch me - I've gained nearly 15 kg (2 stone) since I got ill three years ago 
But it's the steroids (known to increase appetite) plus a huge drop in physical activity, rather than the HCQ that are the culprit.
It might also be worth checking out if you feel any particular food cravings that make you eat more calories but could possibly be telling you something about your condition. For example, I had a long period of craving salt (crisps!) - which corresponded to the time when I had undiagnosed adrenal insufficiency; I am currently mad for sugar and chocolate, which also seems suspicious....x
I find my body is craving all the sugars during my periods of extreme fatigue, it’s like my body is fighting for energy?
Have you noticed when your cravings occur? Or is yours constantly?
I definitely think this is suspicious as once I’m out of the flare the cravings disappear 😏
yes, exactly. It does happen most when I get those periods of extreme fatigue and tiredness - although for me, that's something that happens semi-permanently i.e. at points during every day, as I don't seem to have any period approaching 'normal' or 'OK' levels of fatigue that last more than an hour or two at most. x
I feel like this lately . I used to get 2/3 good days in a row. Now I’m lucky to get 1!!!!! Putting on weight is not helping the current situation. But as soon as I’m fatigued I start eating continuously. Nothing satisfies me. And it’s always high sugared foods I crave. I reckon it’s underlying to some sort of hormone gland that is struggling to function. I’ve not come across too much info on this in the past, and too frightened to mention it to the doctors in fear of being told it’s apart of the monthly cycle!
That's exactly how I have felt - the intuitive sense that one's body is trying to mobilise some source of energy, or a neurotransmitter or a hormone that is supposed to kick in at these moments - but it just can't do it. I have said this to my rheumy and others on numerous occasions but received blank looks. It just doesn't seem to compute. However, my diagnosis of adrenal insufficiency was finally recognised after I decided to do a home test for saliva cortisol levels and took the results to the rheumy - it showed clearly that I was not producing anything like enough natural cortisol, so I got referred for a synacthen test. It's not solved the basic problem though, which the endo still thinks is down to chronic over-activity of the auto-immune problem. I think he is wrong, and that there is a more complex hormone issue going on, so am trying to ramp up the pressure, and the evidence for further testing. x
To me, that makes so much sense.
I do completely feel like my body is not doing something it should. You must let me know how you get on if you manage to see this through .
I will also suggest that other test you have just mentioned, to check the adrenal function. I can’t bare the out look of always feeling so crappy x
Yeh i know,often on steroids for recurrent sinus infections,feel great on them but very hungry,over last year,400mg a day hydroxychloroquine,re helped with fatigue but omg weight gain,none of dresses fit me,i hardly eat,but yes physical activity 0,too sore,and my memory awful am only 49 but it getn worse,so embarrasing,do silly things.🤔
Have you asked to change the type of steroids you are prescribed?
Prednisolone use does pile on the weight.
Maybe you could discuss having a course of antibiotics if the sinus infection is bacterial...hit it on the head once & for all?
I had sinus infections caused by polyps for years......after 10 surgeries laser surgery arrived & once they were lazered off I had no more infections. Speak to your ENT surgeon.
All corticosteroids can make you put on weight. It is possible to reduce the amount of weight you gain when on steroids by cutting the carbs in your diet - especially processed and white carbs as people often describe bread and other flour products. I lost 35lbs while still on 15mg pred - it is possible.
PMRpro. Losing 35lbs on 15mg pred? The only way that is remotely possible is if you simultaneously amputate a limb 
x
There are different steroids from cortico.....I can't remember the name...( I don't mean Anabolic!!!)!but there is an alternative.
I agree it is possible not to gain weight on Pred...but if you are in pain you have enough to deal with, & unless you have iron willpower (you can see from the many posts on here how difficult it is) it must be jolly difficult to deny yourself what you really fancy to eat.
I'm very thankful Prednisolone violently disagreed with me in the first few days it was prescribed, & very grateful that steroid injections suited me. Thankfully I don't need them any longer.
They are all corticosteroids that are used medically as antiinflammatories - prednisone, prednisolone, methyl prednisolone, hydrocortisone, dexamethasone and a few others which I can't remember of the top of my head. The preds are medium acting, their effect lasts more or less 24 hours, hydrocortisone is short acting and dexamethasone is longer acting and more powerful so often worse side effects. But potentially they all have the same weight gain potential.
Maybe I should explain: There isn't much you can tell me about taking pred for pain - I have had PMR for 14 years and been on pred for 9 of them. Without pred I could barely get out of bed, could hardly toilet myself and crawled up stairs on hands and knees. I gained weight, both due to the immobility and pain and due to pred, I managed to lose weight by cutting carbs, as have a lot of people on the PMRGCA forum - who can all tell the same pain and pred story as it is the only available option for most of us. But the low carb approach does help in a range of ways - not least helping to avoid developing steroid-induced diabetes. Sometimes that is the final straw that sends people to low carb - but eliminating sugar does also help reduce the inflammation and so the symptoms.
You obviously have very strong willpower PMRpro......but most of us don't, so I would still advise those finding it hard to control their weight when on Pred to speak to their rheumatologist or Rheumy nurse, sooner rather than later, with the intention of getting off the Pred.
That is my personal non medical opinion......every one of us deals with our AI disease differently - there are many choices & we all have our own way of coping.
I don't think you quite understand. When you have the choice of a wheelchair, being dependent on others for all things and constant pain, or being blind if you have GCA, or taking pred there is no point in discussing getting off pred sooner. And for us - that is the choice more often than not for IRO 5 or 6 years or, for a few, life.
I don't refuse to eat carbs and if I want an icecream or pizza I do - but it is a very special treat. And as a result, all the more appreciated.
I won't go into my medical,history...I do understand you need the Pred...but for the newly diagnosed who are drawn into Pred as the magic bullet, in 2018 there are alternatives so that they don't go down the Pred route forever....unless of course like you there is no alternative.
I do understand Lou..but what I am meaning, is if people newly on Pred can discuss alternatives with their doctors, if only a few succeed it will be worth it.
If I hadn't been taken off it so quickly I would no doubt still be on it 20 years later...I am certainly not criticising people who have to take it....just that they do investigate with their doctors right at the beginning, if there is an alternative.
Wow. What a fantastic read.. great response to your inquiry ! There is really good information condensed into all of these responses coming straight from the ‘real life’ recipients of some of the heavy duty drug treatment that most all of us endure in one fashion or another. And yes, omg the high price we must often pay when one stops to evaluate what is happening to your body as a result of it all.
I, like so many of you, have a rather long list of diseases, and disorders the most important one being congenital Primary Immune Disease, sometimes referred to as ‘bubble boy’ disease. Anyways, I am on a boatload of meds including high level steroids and weekly blood plasma infusions. None of this will ever change or get better. If anything, I will likely be increasing doses of most of the ‘worst’ meds as I continue to age. So, this means all of these crappy side effects will just escalate. I already don’t recognize myself in the mirror. I hate what I see staring back at me. I can’t spend anymore time though trying to mitigate the changes these drugs and treatments have on me. That’s the rational side of me that is still left. The real me, getting louder, continues to be ‘I Hate This’. I feel powerless even though I have tried for many years to work on this. I am not a stupid person. I am not a quitter, quite the contrary as my history would document. Yet, that’s how I feel now. I have zero interest in fighting for a couple of pounds or whatever the side effect may be. Aren’t we allowed to just ‘give up’ at some point ? Is it ever ok to just take your meds, do your infusions ( or whatever else you need to be doing to stay alive ) and keep up with all of your doctors and scheduling... ?
I am really sorry for taking this so far off base. I guess if I could offer just one piece of advice when it comes to your meds and weight gain as the demonic plague that it is, it would be to jump on it right away, as soon as you notice it. With any steroids, the weight will suddenly ‘be there’. It’s almost like magic, black magic. Don’t be like me and I suspect some others, and be sincerely blown away at the doctor’s office when you step on the ‘real’ scale, I mean the scale that doesn’t lie. For me it was like, “ holy crap!! What the hell??”. That was just the 1st 20 pounds.
Hi all I have put on 6 stone since starting my treatment for SLE and Sjogrens plus a few other auto imune problems. My steroids are to blame. My rheumy told my I was 'critical' when I was diagnosed. Had positive ana, in fact I was positive on all markers and subsequent tests. I also have stage 3 kidney disease. I have no choice but to take steroids, hydroxychloroquine and many other tabs etc. I had a severe reaction to Azathiaprine and was taken off that strait away. At the end of this month my rheumy wants me to start on methotrexate and I am very worried. I have been told I will have to stay on steroids but they are hoping to reduce my dosage further by giving me methotrexate in the hope that it will give me the same or similar benefits that my existing steroids do. I am eating sensibly but all I have to do is look at a lettuce and bang! On goes another pound. It really hurts when I get hungry and I feel really ill if I dont eat. Hey ho! Vent over. Take care all. X
It is tempting to stop taking meds because of side effects especially if you are feeling ok but you have to be careful especially with steroids if you have been on them for many years . I have been told I can never come off steroids now . I have asked if I can stop the immunosuppressant drugs and been given a definite no , far too risky as if I had a severe flare that could cause further damage to my kidneys and could result in organ failure . Don't just stop medication without speaking to your consultant .
I think it is because the body stops producing cortisone naturally when you have been taking steroids for many years , it's dangerous to stop them I believe x
Yes I have gained alot of weight from this also ,but if I do without it I can't move within 2 weeks of not taking the meds , so I found myself taking the meds again , I just keep gaining the weight no doctor will help me as in getting the weight back off . I work ,I exercise, and it's just not coming off.
I did with the steroids that got to me and put 4st on went to Slimming world and managed to loose 2 st. so am on my way to controlling the Choccy intake with other alternatives. I did have to give up work when I was 50 and that did not help with the weight as I am not as active as I was (well who is at 71 ?) Good luck I hpe we have all been of some help.x
