At the beginning of the covid pandemic my consultant put me on methotrexate because the hydroxychloroquine I was on was giving me stomach cramps, vomiting and diarrhoea. The methotrexate did not seem to work even after increasing the oral dose and then switching to injections, the blood tests kept showing inflammation and I was anaemic and raised ANA on top of that I was tired all the time and losing my hair and became lactose intolerant. So we stopped it and was put on prednisolone and was weaned down from 20mg to 5 mg. So last month. My bloods still showed disease activity. Oh I forgot my urine dipstick always shows blood and protein but they send it to the lab and the results are normal. They put me back on hydroxychloroquine and the cramping began again. Now the choice is between Azathiopine or Mycophenolate. I’m not sure which one to choose and I’m afraid I might react to them. My mum is vegan and she insists I manage the lupus by changing my diet. I’m just so frustrated right now not sure what to do.
Not sure what to do …: At the beginning of the... - LUPUS UK
Not sure what to do …
I'm sorry to hear the Methotrexate isn't helping you. I have no experience of the Mycophenolate etc as I'm on Methotrexate (Mtx) myself but I just wanted to say that initially when I was placed on immunosuppression I took Ciclosporin which didn't help and in actual fact it gave me high blood pressure as a unwelcome side effect!! What I wanted to say is that just because one med doesn't work for you it doesn't mean that the others won't either. It's just a matter of trying it and see if it helps .Another thing I want to mention is that a lot of us have stomach upsets, heartburn,nausea on certain brands of hydroxychloroquine. Apparently it's in the fillers used in certain brands. If you've been taking Bristol or Quinoric they are kinda notorious for upset tummies. IPCA brand is the same ingredients as Quinoric too. Most of us find that the Zentiva brand is well tolerated.
Whichever med u decide to take will be watched closely by your doctor..you'll probably have to have fortnightly blood tests at the start and who knows one of them might just make life that more bearable.
I'm sure others will be along to give u their experiences on these meds..then u can make an informed choice. But please try not to get too stressed..all is not lost. Early stages of lupus diagnosis involves an awful lot of trial n error and I understand your frustration..hang on in there n good luck with whatever you decide. 💜🌈😽😽Xx
Thank you for the encouraging word. I’ve had lupus for about 8 years now and they cannot control it. With the hydroxychloroquine I wish it was just a simple stomach upset but it’s proper cramps with sweating and shaking and like my intestine are twisting and feel like being cut and I have almost passed out several times so it’s not worth it. Maybe I will speak to my consultant about the brand thing and try that for about 2 weeks and see how that goes.
I cannot tolerate Hydroxychloroquine at all, regardless of brand I will never take it again. I’ve had no success at all with the 3 different medications prescribed to me so currently take nothing specific for my Lupus. I’ve never take Azathiopine or Mycophenolate so can’t comment on them, but others on here might be able to share their experiences.
My Husband used to take Methotrexate for his RA but he suffered lots of side effects & it didn’t help his symptoms at all.
So much trial, error, suffering & frustration with the weird & wonderful diseases we have.
All the best to you anyway 🙃
Sad but true ‘the weird wonderful disease’ for sure.
Hi.ive taken azathioprine and it didn't suit me.after 7 weeks i developed drug induced hepatitis. Once my liver had recovered I was then prescribed mycophenolate.i had side effects at first including nausea and bad headaches but I rode them out and have been on it now for 3 years.We would all like to be able to control our illness by diet alone but medication isn't just about controlling things now it's also about protecting our organs for the future .Lupus can cause organ damage which sometimes doesn't become apparent until the damage is done e.g Lupus nephritis. ( i have class v LN) As Turquoise and KK have said it is trial and error finding the drug combo that works which is hard as many of the drugs take months to start to work.
I also became lactose intolerant and I had to change alot inc making more from scratch and reading product labels for any types of milk products .....from dried skimmed milk powder to whey .its amazing /ridiculous what they put milk products in.
Good luck...keep smiling xxx
Thanks for the encouraging words. I panicked when I became lactose intolerant coz of the methotrexate but it’s resolved since I stopped it. I will go for the mycophenolate because it seems like my kidneys are starting to be affected.
I hope your kidneys arnt affected .the only way to be certain is by biopsy x
I absolutely agree. Before Lupus, I was dead against "drugs" after my Mum died with 29 different sorts of pills for various different health conditions. However, I've had to learn that Lupus can affect your organs so I take Hydroxychloroquine with a heavy heart, but luckily, it seems an unaffected one. I am also vegan, but have been for many years and prior to Lupus. I have found that various things set off inflammation really badly especially in my hands, so anything that is tomato based is banned and I replace with peppers in jars and put them through a food processor. I do believe that a combination of the right medication and food is the right way to go, but it is always a work in progress and a very individual thing. Probably your gut biome is shot to pieces and so I've been researching with Prof. Tim Spector on his Zoe app. He has also written a book, which I'd live to read. He does lots of YouTube stuff and podcasts. I'm also doing his eating within a 10 hour slot and not eating for at least 12-14 hours which has made me feel so much better and less like my tummy is bubbling away and bloated all the time. I've found with Lupus that there's no middle ground, where I used to have before Lupus, that's the annoying thing. Finally, before I bore the pants off everybody, I am a yoga teacher and I teach mainly yin, restorative and a slow flow practice which has helped my joints and muscles so much, but of course it's not for everyone. Round we go again back to the start, the most annoying one, Lupus is very individual, but that is because we are all individuals. Here endeth the lecture. Peace, love and light to you all. Namaste 🙏 xx
Thanks
I have reacted badly to all of these medications in one way or another apart from Mycophenolate - which I do really well on as long as it is brand CellCept - the only one I can swallow. We are all different but I have noticed generally that Mycophenolate seems to be the most well tolerated. Just in case it helps. Best of luck.
I probably go for that one. I hope I can tolerate it. Thanks for the advice
ps I probably should have said that I don’t have lupus - I have other CTD overlap - but always have blood and leucocytes, often protein in my wee. It never cultures up but I think Mycophenolate is the one to slowly stop the protein when my dose was raised to maximum. Also I have had some active disease despite meds for 11 years but then I cut out almost all sugar and all gluten for other GI related reasons. Suddenly my CRP and all other bloods are in range for first time I can recall. Not advocating any one diet such as veganism like your mum wants you to try as no one diet suits all. But in tandem with my meds I’ve found that what I consume or avoid definitely affects my systemic inflammation levels, skin etc and for me it’s products containing high levels of sugar and wheat.
Mychophenolate is good. I was on it 2020, then when I decided to give birth my specialist switched to Azathoprine, but after given birth, seems like my lupus has getting worse and now am back to mycophenolate and for the past 2 months since I started, I have seen some improvements.
Ps: when you are on Mycophenolate be careful not to get pregnant, if not you might get miscarriage or harm yourself and the baby.
I have been on Azathioprine for 2 years and after some initial side effects I tolerate it really well and it has made a big difference to how I feel. I tried Hydroxychloroquine for 12 months and the different brands but like you it caused lots of issues for me.
I was really reluctant to start the Azathioprine and it took a year for my consultant to persuade me but I am so glad I did.
I hope you find something that works for you .
I hope so coz my consultant says he is running out of oral options. Im not excited about infusions
Just wanted to tell you Mmafox that my husband has Rituximab IV Infusions for his Rheumatoid Arthritis and has been so much better - the improvement in his symptoms compared to previous meds is fantastic & his flares are far less severe & regular. He also takes Sulfasalazine, Meloxicam, Tramadol & Paracetamol, but compared to how he was on the meds, (Adalimumab Biological Therapy Subcutaneous injections which he did himself prior to the infusions, Lefludamide & Methotrexate), he is like a new man!
Try not to fear IV infusions if they are offered to you as they could really help you. 🙂
Did you try different brands of hydroxychloquine? I only ask as people on her were saying about symptoms from some brands. I realised this was me.
I can only tolerate zentiva x
I’ve taken all kinds of brands but I never thought to see which one react which way. Maybe I could try that.
Diagnosed with SLE in 2010 tried all the medication you have mentioned to no affect so don’t take anything. My inflammation runs high too. Have over active thyroid now so trying to sort that.
Hello Mmafox, just wanted to say that I have been on Azathioprine for 24 years without any major issues. White cells have dipped a bit from time to time but reducing the dose temporarily solved that. I’m still having blood monitoring done every 3 months. It is one of the few drugs I have been able to tolerate - steroids and hydroxycholoquine just did not work with me. Would encourage you to try it ( or Mycophenolate) and see how it goes. If you can tolerate it, it could keep things under control and really improve your quality of life.
Gemim
Hiya Mmafox, I am sorry that you are going through all of that . I was put on Hydroxychloroquine 6 years ago and had stomach cramps and felt nauseous so I came off it but all my symptoms got worse. They have recently put me back on it and I had to start with 1 X 200mg daily and now 2x . I did get stomach cramps etc but I was asked to preserve and I feel ok on them now. I have been taking them for 3 months now. How long did you stay on them? X
I stayed on them for 2 weeks. After being put back on. The cramps didn’t start immediately I started off by being gassy, then a few days later it was nausea then diarrhoea then the sweaty cramps came and after 2 days of it, I stopped and called my consultant.
my mother in law was on HCQ and methotrexate but has now been put in salazopyrin which is given when other drugs don’t work. Worth a chat.
Diet does impact in symptoms so removing trigger foods will help but not sure it will cure everything.
I will read up on it. I could try changing my diet but I must be honest I don’t have self control when I comes to certain foods.
Hi I was just going to say what Kat said I cannot tolerate Quinorec brand of Hydroxychloroquine but I am absolutely fine on the other brands. Quinorec makes me live in the loo with cramps, gut pain, cold sweats , Maybe you could ask to try another brand? Good luck whatever you decide xx
I will speak to my consultant coz it’s something I didn’t quite explore. It could be a case of finding the right brand.
Thanks
Hi. I can't tolerate the Quinoric brand either.
Regarding diet changes there is a small but growing medical evidence base that Lupus and other CTDs have there origins in an overgrowth of bacteria deep within the gut.
There are a number of diets that are sending patients into a clinical remission (blood tests negative). I follow Dr Brooke Goldner' Lupus diet ( no meat, no fish, no eggs, no dairy, no added vegetable oils except olive oil & drink 2 litres of green smoothie a day - i.e. vegan avoiding rapeseed & sunflower oils - goggle her). It changed my life. I feel almost normal gain. It took about 4 weeks for me & I have regained so much energy & a new enthusiasm for life.
This lady, on the other hand, is on a UK clinical trial. Her diet change is simpler;
healthunlocked.com/lupusuk/....
If you are prepared to give it a go, there is a lot to be gained but you will have to commit to it which some find difficult.
Take care,
Sarah x
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