Is anyone else taking Hydroxychloriqine and Cellcept

[2sfamily]

I have SLE. I am taking Hydroxychloriqine and Cellcept. Is anyone else taking both? I also have Sjogren's disease and Fibromyalgia. I'm 40 years old. I was diagnosed with Lupus a little under a tear ago.

[Penguintaz]

Hi 2sfamily,

I used to be on both but I only have SLE.

I was moved off of cellcept and onto methotrexate after suffering a flair up that caused water in the lungs.

Did you have questions about them?

[cillfred]

I am taking both and methotrexate. I have SLE and rheumatoid arthritis. I also take a small dose of prednisone. I finally feel normal. I was giving myself humira shots for 10 years with metho. That combination worked for 10 years but developed SLE. It took changing doctors to finally get the right drug combination. Hope it works well for you, good luck

[panda2]

Hi there,

I'm on both as of Wednesday.

I'm presently diagnosed with UCTD and have been on Hydroxy since January. That helped joint issues enormously, but all my other symptoms were still there. Fevers, fatigue, sweating, terrible sun sensitivity, rashes. I was then put on Mycophenolate in May, in the form of Myfenax, which gave too many bad side effects to continue. However.. despite the couple hours of bad side-effects each day, I also began to feel almost great again while on it, especially when my extreme photosensitivity faded away! While I was off it for a month, all the symptoms began to come back. So on Wednesday I was put back on it again in the Cellcept formulation. We are going to introduce it more slowly this time and stop at 3/4s dose, rather than the full amount and see if that's enough for me. I was told I would be on it longer this way, but this plan suits me well, I hope... I am praying it will have the same good effects it did the first time.

How long have you been on these and have you had any positive effects?

Panda x

[Kerrclan]

Hi 2sfamily

I am 45 years old & I have been on Cellcept 3grams daily for three years with 400mg hydroxychloriquine and Prednisolone. I was eventually diagnosed SLE as most likely diagnosis. I still continue to flare but symptoms less severe. I insisted on Cellcept brand rather than generic as all clinical trials were based on Cellcept. GP was more than happy to accommodate this. I also find Blackrock hydroxychloriquine brand has less side effects as seems to be coated in protective layer. Other brands like Bristol and Quinoric taste extremely bitter & nauseating on my tongue. I suffer dyspepsia after them. I would say my response has been a lot slower than I expected. But I guess I am more realistic in that I probably expected a miraculous improvement overnight and suddenly go into remission whatever remission is... I’ve been lucky no sign of side effects and bloods stable. Still get rashes & ulcers & severe fatigue out of nowhere but not as prolonged which is all I can ask. Have to say I did hire a mobility scooter recently as I was fed up reading a book in car waiting for family on days out. Best thing I ever did.

Good luck

[Bmagrl]

Hi!

I have SLE and Adrenal Insufficiency. I've been on Plaquenil (400 mg) since May 2017 and Cellcept 3000 mg since Sept. 2017.

I have previously tried Imuran but it dropped my blood counts too low, had awful side effects and wasn't helping Lupus symptoms which is why we switched to Cellcept.

The meds have helped a lot but I was still having pretty strong Lupus flares so I have also been taking Benlysta infusions for around 4 months now and it's helped tremendously with the fatigue and pain.

If you have questions please feel free to ask!

[pelamid]

I was originally diagnosed with RA 35 years ago, after a couple of years specialists changed that to Lupus and then Mixed Connective Disease.

After about 25 years of variable health problems I was extremely ill again and a kidney biopsy showed I had Lupus Nephritis. That's when I was put on a combination of Hydroxychloriqine and Cellcept, as well as Prednisilone that had been on for a few years.

Within a few months most of my symptoms were suppressed and I gradually came off Prednisilone.

After a few years I got blood poisoning from a small cut on my hand. The Cellcept was stopped as it suppressed my immune response too much. It took almost two years of antibiotics and an operation to get rid of the infection that had set into my wrist. But at least I still have my hand attached!

That's almost 10 years ago and since then I have recovered from the Lupus Nephritis and the blood poisoning. Still on Hydroxychloriquine but in pretty good health with only what might be considered normal "aches 'n pains" for a 66 year old.

I feel without the Cellcept intervention I might never have recovered, but good to find it put the Lupus into it's box! I just have to be careful about sunshine and stress, pretty sure that combination is what has brought on various "flares" over the years.....and keep taking my Hydroxychloroquine!

Sorry for the long response - but that is the abbreviated version. Anyone with Lupus should understand! Good luck with your treatment.