I've been trying to brave it out - most of the time I can't tell the difference between regular symptoms and "oh my god why didn't you call us before?" I can deal with a lot, but 48hours of diahhroea in extremely hot weather, swollen feet and ankles and feeling like I could sleep a week is just a "nope". I tried calling my rheumy advice line (closed), and my GP is on holiday till end of August so I fear I am at the mercy of the most dreaded of spectres, the On Duty Locum. *shudder*.
I think my rheumy called this one: I don't know how long it takes to be cleared for next tier of meds via NICE but I hope I don't have to wait for years. Now let's just hope the Locum doesn't just dismiss me.
Off for more charcoal tablets.m
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Silvergilt
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Oh no! How long have you been taking it for? My stomach was like a washing machine for the first three weeks, week four it has settled down but I never had the diarrhea. I did have hallucinogenic dreams though. I hope you feel better soon.
Only a couple of weeks, but I reacted so badly to methotrexate/apparently allergic to a lot, my rheumy was almost certain the plaquenil wasn't going to work. But he has to tick all the boxes before presenting my case to panel for next tier of medication, so I had to at least try it.
I'm usually able to deal with stuff - to the point I get told off for not calling in sooner, usually - but this is just nope. I have carer responsibilities and I don't dare be more than 20 steps to a loo right now.
I don't even have a regular doctor over here in Canada...I see who ever I get...which sux...But lately the receptionist at this big clinic pushes me to this one doctor more often..thank god! I had a student doctor one time was a real smart ass....less on the smart, more on the Ass....Its a real worry;(
Oh dear I can relate to this post. To make you feel better about this break up I've tried Sulfasalazine which made my ears and neck swell and have me a horrible sun sensitivity rash.
Then tried Methotrexate orally for six months. Was okay for a while but it didn't do enough and liver said no so Plaquenil was added in. By this time MTX was causing severe sickness. Then switched to injections and did great on the combination for six months but slowly side effects crept up.
But came off both eventually when nausea and diarrhoea and the foul MTX taste I got defeated me. Plaquenil ended when my face and lips swelled up with a painful rash. Nifedipine for Raynauds same. Now about to see rheumy but told I won't qualify for next tier until my hand joints swell up again (RA).
Good luck with the next tier - they are meant to be less bad for side effects from what I've read.
Twitchy
in reply to
I love how that works. You get the medicine when you're really, really, really sick! Who makes up these rules???
It's all about the cost, which is frustrating. In the long term, people on medication that works are able to return more back. I've got caring responsibilities, therefore I sAve money they would have to pay big money for to perform same level of care. The more ill I get, the more I have to call on social services to fill in for what I can't do. So I hope taking that into consideration they'll get their finger out and sort it!
Heck it's so trying isn't it?! I'm off all meds except Levothyroxine now and although I sense things are creeping back - I'm hoping it is all in my mind and I can keep flares at bay by regular exercise and healthy diet. I just can't face trying anymore DMARDs now.
If I didn't have my son to think about I wouldn't bother either. But I am his dole carer. The more sick I get, the more time he spends zoned out in front of telly because I save my energy for making meals. I just hope it won't take years for the ok!
Yes I can see that would make a big difference to me as well. I only have one son living at home now full time and he's very independant. When my three boys were younger I would do whatever I needed to in order to be well enough to look after them so I do understand.
I really wish all doctors had to study health economics so they could work out how much it costs society when we are ill. I do a lot of volunteering for an RA charity and for healthcare improvement where I live so if I'm too unwell to travel or too low in energy to pull my weight I can't contribute to society in the way I like to and it costs them a lot of money in missed flights, accommodation and finding replacements for me etc. Not to mention my work for the NHS as a self employed person too!
Tx
I had issues when I first started as well. Dizzy, light headed, nausea and stomach cramps. I think after about two weeks it all passed thankfully. I hope you get some relief soon as it sometimes makes you wonder if its all worth it.... I have started back on prednisone with plaquenil and back to square one with side effects....stomach cramps ugh!!!
Hi: I discovered something the other evening. I usually take my Warfarin and Plaquenil around 4-5 (1-2 hours before dinner) or if I'm going out, may as late as 9-10. I usually take the meds with water or milk. I was having dinner and took the meds with dinner and a short time later, I started getting cramps and a bad case of diarrhea. I'll never take the meds with dinner again. I think it was just too much for my stomach to handle-digesting what for me was a big meal--and the meds together. It was a good discovery. Are you taking it with meals? I hope all works out well for you.
I found that Plaquenil made me nauseous unless I took it with food. Methotrexate I used to inject last thing at night but latterly was waking up in the night feeling I might be sick. The trots would start the next day after dinner.
Hi, my eleven year old daughter is on Plaquenil and has had no problems with it at all, she always takes it after her main meal. Think it's just pot luck whether medication suits you or not. Hope you feel better soon.
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