Cellcept V Imuran and Side Effects

[rottiro1]

So the time has come for me to go on cellcept or Imuran. I was doing well on 20 mg prednisone but symptoms started to come back as I tapered. So a few questions

Which do you like better Cellcept or Imuran?

Side Effects - I have a phobia of nausea and vomiting so want to know how common

Is anyone worried about skin and other cancers or liver failure?

Is it more helpful than prednisone?

Have you gotten more or less infections and upper respiratory ailments with the immune system shut down?

Thanks for any advice. I am nervous.

[Mooka]

Hi

I think both affect different people differently. I was dizzy on the imuran but never got to the bottom of whether it was that that was causing it or my sinus problems. Had a couple of infections in the 5 months I was on it. You should have a blood test before taking it to ensure your kidneys can cope. Was only on cellcept for a couple of weeks when I got chest pains and stopped taking it. Others can be on these pills for years and not have problems. I was still on pred when I took these. Personally I wouldn’t take cellcept again but if I had to would be prepared to try the imuran again. But we are all different. I hope you get on with whatever you decided to go with.

[Mollie01]

Hi

I'm on Cellcept and have been for 5 years. I have blood tests every 3 months which have no ill effects on my kidneys or liver at this time.

I did try Imuran but couldn't tolerate it made me feel very ill and my liver enzymes went through the roof.

I also take Prednisolone now down to 5mg daily. I do get chest infections but I try to look after myself and I'm able to stop my cellcept for a couple of weeks if the infection is really bad and let my immune system spark up a little to help recover.

For me its about quality of life. Both cellcept and pred allow me to have a good life .

Hope this helps. Take care. Mollie x

[rottiro1 in reply to Mollie01]

Thanks!

[Oshgosh]

Hi, I think I’m a bit like you. Ctd nsip.

I’m down to 10 mg prednisolone .still have shortness of , breath ,fatigue,chest pain most days, etc etc. Have done pulmonary rehab,now gothe gym. I’ve had CBT,,it’s all helpful,but doesn’t relieve my symptoms.

Am going to ILD unit on Monday,I’m expecting to be put on some drugs f the sort you mention.

I’ve got to see the ILD consultant,then the rheumatologist.

Apparently Decisions are made by a multi disciplinary team,I have to trust them,but it’s hard.have lung scarring and kidney disease

I’m really worried about everything. I’m worried about the short and long term side effects.

I’m putting a brave face on it,but am really worried.

Sorry to ramble on and even sorrier that I can’t help you

[rottiro1 in reply to Oshgosh]

Thanks! I understand the worry. My dad had a kidney transplant and died of a rare skin cancer related to anti-rejection drugs NOT the ones we are discussing here. My breathing is much improved from last year but my DLCO went down when going from 20 to 10 mg of prednisone. I am being seen at both UCLA in Los Angeles and Columbia in NY so I know I am seeing the best and they think that cellcept or Imuran will help and at least to try for a year to start and then see if there is improvement. I am truly thankful to be better and ready to commit to what is recommended but it is concerning. Thanks for the support. We do sound similar. Does CBD help? What type do you use?

[Oshgosh in reply to rottiro1]

I was offered CBTcognitive behaviour therapy.i was pleased to be offered it,it was easily accessible on the NHS.

I did it online,they said I. could see a counsellor,but I had so many appointments at the time that online was better for me.

I had 6 sessions.it helped me put my thoughts in order.also to ereassess my priorities. All the sessions are online,so I can refer to it,1thing that was really helpful was planning for hard times. When I feel really bad I think back to the CBT and try to keep positive.

I really don’t know what to think.

If I get severe side effects with no discernible benefit or improvement??

I don’t know,my husband doesn’t like discussing it .it upsets him.

All the GP said was that it would make me feel better!

I am going to ask tomorrow. I am hoping to get more information.

Thanks for replying,it has helped me knowing that there is someone similar to me.

They keep telling me that I am very complex and don’t fit into any specific category.