I’m not going to moan as I put on so much weight whilst on steroids. Now the weight is dropping off me, I’m constantly on the toilet since I started 400mg 2 weeks ago.
Is this normal until the body adjusts to it? I’m not complaining, just I can’t go out anywhere at the minute so hoping it subsides at some point soon ? Hopefully you lovely lot can reassure me this is normal 😘x
Peeing or No 2's????
Number 2 😬 sorry I should expanded on that
X
If you can't go out because of it - you need to speak to your doctor. Maybe a half dose might improve that aspect until your body gets used to it.
Did you gain the weight back along side taking steroids?
You have struggled so long. It might be good if they could find a way to help you tolerate the medication. Could you call your GP and ask if you could take an Imodium? Even a half has helped me in the past for GI stuff. Was only allowed it once or twice a week. Hoping you can gradually adjust to it. Sorry you are having these difficulties. K
I’m going to get some dyralight which is a salt replacement. It must be having a negative impact as my skin is very inflamed at the minute, not had it this bad for a while now. X
Did your doctor tell you to do that? I don’t think you should do anything like replacing salt without talking to your doctor. They usually like to know what is going on with your kidney function before making that decision. They may want you to be taking your blood pressure at home. I really think you are better off seeing a doctor. That is what they are there for!
I thought it maybe normal until it settles. Will try doctors but I don’t think they ever listen. One of the gps I saw there for my sleep problems told me the nhs isn’t there to solve all my problems 😳. It took me ages to go back and see a different doctor who turned out to be my saviour. I guess if I’m honest I’m scared of doctors now, I’ve been let down so many times. I just plod along in my little life of suffering with a smile on when I feel ok
X
I'd have reported that GP - no, they aren't there to solve all our problems but they are there to identfy which we can manage ourselves with a bit of assistance and which are their department. That's why they spent a long time at Medical School and are paid a lot.
She was a pig!!!!! I think many people complained about her. If you need an emergency appointment your guaranteed to see her as no one wants too 😅
I never understand why such nasty people go into general practice. If you don't like people be a forensic pathologist or a surgeon ...
I understand. But your symptoms after starting a new medication for a serious medical condition would be something any doctor would want to know. Or could you call the nurse at the rheumatology service? The nurse will likely be very familiar and can run things by your rheumatologist if need be. Not a good idea to plod along now!
Funny thing I rung the rheumatologist department today, I started medication in January, my next appointment with them is not until Aug , I think this is why I’m just accepting all is normal and ok because they don’t seem to bothered!!!
Having said that I had a good dermatologist appointment 2 weeks ago, he was not at all happy with this wait time to go back to them so I think he was going to chase that up.
I see him again in 2 weeks x
It's amazing how the dermatologist seems to show more sensitivity and concerned than the rheumatologist. I've had the same experience with dermatology requesting rheumatology appointments are brought forward. This site makes up for the inadequacies some of us experience and I've learnt more about my auto-immune conditions as a result. The posts help me prepare questions for each appointment I attend. Good luck with your medical appointments.
Ok, was you on the toilet a lot?
I’ve also started getting pin prick marks on my skin that grow , become bigger and scaly then disappear leaving a scar behind! I’ve convinced myself these are to do with the tablets, did you have anything like this?
I have red spots that turn scaley then scar, called pityriasis lichenoides chronica, they started when I was on mebeverine. They come and go had them for nearly 3years now.. They don't itch or hurt, would have attached a photo but there's no wat to attach it..
I am going to read up about this. Thank you for sharing. I’ve never heard the name before and recent dermatologist was interested it what they might be x
I had one biopsied 2 weeks ago, hopefully that will show something but unfortunately my body is not giving away the answer too easily 🙄
Hey LisaLou - only just seen this. Just wanted to say I had the same prob with HydroxyQ when my first Rheumy put me on it a couple of years ago - I had dreadful runs and stomach pain... plus unbearable migraines with visual disturbance. I kept on it for as long as I could (5mths? think I stopped myself in the end!) but they officially took me off it at my review as said I was intolerant/allergic due to those side effects. Rheumy put me on methotrexate after a month of steroids... No problems with metho.. well, apart from sore tongue but he upped my folic acid to daily other than metho day, which helped a little. Doesnt sound like Hydroxy is a great match for you either.. Please call them again and ask your Rheumy to call you or have an urgent review. Hope you get some support on this and feel a lot better soon.. D x
Have you changed brands? Some people find one brand better than another.
lupusuk.org.uk/hydroxychlor...
I was fine on the Teva brand (yellow, film coated) but local pharmacy dispensed the Bristol Laboratories one which is apparently film coated, (if so then with pure evil only!! So bitter) This one has caused me persistent nausea and upset tummy. Have always taken them with food as directed, but a noticeable change all the same. Sadly they seem unable to get the Teva brand. Plodding on.......
Totally agree with the bitterness and pure evil comment on the Bristol Laboratories brand. This must be a cheap brand and no way is it filmed coated. I had a month of dread taking my meds day and night because of the awful taste left in my mouth. I've insisted my GP pharmacy provide Teva brand which was the brand I was I initially started on by the hospital pharmacy.
When I tried to explain the bitter taste to the Pharmacist, she looked me in the eye and said the two brands are identical, and pointed out that the box clearly states "film coated!" I suggested she might like to put one on her tongue to try it, but she backed down then, no fun at all.
😂🤣😂 I bet she did not take you up on it.
Being immobilised by something like this is awful. Someone suggested Imodium but be careful as it can just postpone the inevitable. I’d talk to GP.
Hi Lisa
I was on 400mg HCQ, now on 200mg. It did upset my gut though I did not shift any weight. Like you I had frequent trips to the loo for a no. 2.
Folk on this site suggested splitting the dose. So I began taking 200mg with my breakfast and 200mg with my dinner. Within a few days normality returned - hooray!
If that does not do the trick then see if you can get hold of the coated HCQ. That was another suggestion.
Three cheers to the wonderful folk on this site!
Joy
I take 400 mg daily but split the dose morning and evening. It works for me.
Didnt matter what I did... was just dreadful whether on 200 only after reducing down from 400. Just unlucky. And yes, in reply to your response abut your eyes... as you know HydroxyQ can affect your eyes adversely. Have a read of this... rcophth.ac.uk/wp-content/up... Hope you ok, x
Make sure you take it w food
Lisalou19
Hi I just got back From my Rheumatologist appt today and she’s starting me on this medicine as she’s now leaning towards diagnosis of Bechet’s, but she said your weight had a lot to do with your dosage.
I weigh full clothed 159lb. She is only letting me take 300mg and is adding this with the colchicine.
I’m not sure if anyone else has knowledge of that as I’m still learning and was gonna post questions on here (I will here soon)
Take care of you
That would make complete sense. I was about 12 stone 7 when I was taking 200mg, now I’m down to 11 stone in a very quick time. No matter what I eat or when I take them I’m having problems all of a sudden x
They may have your dosage to high. My rheumatologist politely said to me Now wait I need to double check myself and so we need to not talk (lol). You know I was irritated with her prior to today’s appointment I was ready to move on, but she explained why she was perplexed and the pictures, culture was all she needed to see to move towards diagnosis of Behcet’s. So I have a different mindset helps to that she was more empathetic and that she was more approachable and expressed I need to message her when this stuff happens. Other times I left her office holding back tears and feeling like she thinks I’m crazy 😢🤪🤨 .
There is another user on here who I speak with a lot. She has also been diagnosed with bachets. Just like you had the struggle to get a diagnosis. Mind you seems we all struggle !!!!!!!
X
Thank you LisaLou19 I didn’t really know that that this medication was for Lupus too. It seems there is a lot of similarities for some of these.
I’m one happy Lupie 🌸
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