I have been denied IVIG by NHS England . I have been prescribed immunosuppressant medication instead .

I feel bad on them after only three days of taking them. I am dragging myself about feeling lethargic. Dizzy: low mood: and tearful. I wonder if anybody else has had experience of a similar drug to suppress the immune system ? Thanks in advance.

[tracynoe]

Which immune suppressant are you on?

[Hidden in reply to tracynoe]

Mycophenolate Mofetil 500mg

[tracynoe in reply to Hidden]

I take Mycophenolate 2000gm per day in a split dose I have been on it for 6 years, at first I got stomach pains and diarrhoea but it gradually died down after 3 or 4 months once the dose was stable. It could be the disease rather than the medication that is making you feel this way it's definitly worth sticking with it as it has less side effects than other immunesuppressants as barnclown says if you go to the Lusup section of this site there are a lot of peolpe on this drug and maybe someone else has your symptoms.

[Hidden in reply to tracynoe]

Will follow up with your suggestion. The comments are very helpful and much appreciated.

[Barnclown]

I'm on myco mofetil (cellcept) for systemic lupus (my raynauds is secondary).

I started myco in January @ 500mg daily & am now up to 1000mg daily, which rheumatology considers my therapeutic dose because my symptoms are responding well.

I haven't had the sort of reaction you have. Instead, I've benefitted generally. So, I hope you're letting your drs know how you're feeling.

If you would like to hear more about reactions to myco, you may feel like posting a question on the Lupus UK forum, because there are lots of us taking myco on the Health Unlocked forum (you'll find it by going to the communities directory at the bottom of this page)

Take care

[Hidden in reply to Barnclown]

Thank you for replying. I will try the Lupus site.

[Hidden]

Thank you so much. Will have a try at posting to the site you suggest.

[Barnclown in reply to Hidden]

Hello again:

am glad you replied because today I've been thinking back to my first 2 weeks on myco, and took a look at the daily log I kept of symptoms, and YES, I did feel some strange sensations.....stiffness in my upper neck + a "fizzing feeling" + headache....BUT I stayed calm because these sensations are sort of familiar to me from other times I've started a new medication...So I felt it was v likely these symptoms would settle down within 1 week to 10 days. AND, yes, these strange symptoms DID settle for me in that period of time.

I did tell my gp & my rheumatologist about these symptoms later, and they seemed to think this adjustment was normal. I just told my drs that I hadn't felt anxious enough to alert them at the time.

Sorry I forgot!

But, even so, I do suggest you check with your drs about your reaction, just to be safe

Wishing you all the v best

[Hidden in reply to Barnclown]

Thanks for taking the trouble to come back to me about this. I may give it another go and see how I feel after a week or two. Many thanks and best wishes to you.

[CheetahGirl67 in reply to Barnclown]

Cheetahgirl

Hi. Did u know that Myco causes bad brain problems. See a Neurologist. Keep him on your team for regulay visit. Read the information sheet from your pharmacist and use a hightlighter to highlight your symptoms then show it to your rheumatologist. I'm a nurse. Do your research. Read everything on it n watch your symptoms n document them. Don't let your doctor ignore the symptoms that he shouldn't be. I'm about to start on this med. There is a lot to pay attention to before starting this drug n to keep watching for the duration. Wish you the best.

[Barnclown in reply to CheetahGirl67]

Exactly! Very important advice! Yes, I have read about all the possible probs with myco. I always read about the probs before I start any prescription medication

I posted that reply 3 years ago. Am still on mycophenolate as part of my daily combined therapy lupus meds and those initial reactions did disappear within a month or do. Since then I've had only benefits from myco, no probs at all. Thanks to daily 1000mg myco I can mainly keep my daily prednisolone dose down to a v low level of 5mg per day

I hope myco suits you too

🍀🍀🍀🍀 coco

[graygirl1]

Hello there. I have every sympathy with you. I too have had a lot of skin rashes and irritation for over ten years. I suffer with Raynaud's and Scleroderma amongst other things but the itching sometimes drives me crazy. It is difficult to get the medics to understand the problems but my rheumatologist was great and took my care over. My GP was happy to be guided by him. I still suffer greatly with skin problems. My treatment is similar to your own. I am not sure what else can be done to improve things for you.

I think it is a case of learning to manage the symptoms with the help of your doctor.

It is a constant battle but keep trying different skin care products which your doctor can prescribe if too expensive for you to buy. They tend not to prescribe the basics like aqueous cream and emulsifying ointment as they are quite cheap over the counter and quite soothing. Don't be afraid to let your doctor know all your difficulties.

Taking antihistamine will help. I usually take mine at bedtime.

Regarding Nefedipine, I find it to be of great help with the cold so good luck with that.

Feeling low and tearful are also symptoms of this illness. It is so difficult to manage and to cope at times that it is impossible to feel up beat all the time. I have cried buckets over the years but I keep telling myself there are others worse off than I.

Please, just be kind to yourself and try not to fret. You will get a lot of support and advice on this forum. Remember also that you are not alone and we understand how you feel.

I wish you all the best and for more comfortable times ahead. Summer's here at last so try to enjoy the warmth as much as possible.

Graygirl1

[Hidden in reply to graygirl1]

A wonderful post. I am grateful to you for the advice and support . I am 23!years into S.s. now and my balance is now greatly affected. It is a nightmare illness isn't it. You never know what is coming next. Glad you have great support from your consultant and Gp.

[graygirl1 in reply to Hidden]

Hello Romulus. You are so young to be having such a difficult time with your health. Unfortunately illness is no respecter of the young or old, rich or poor, black or white. I know it is not fashionable these days to talk about ones faith and the power of prayer but I pray a lot and it gives me a lot of comfort and hope for the future. Everyone has a different way of coping so I hope you do also. It must be very hard for one a young as yourself. It is a time when you should be living life to the full. I wish I had a magic wand but all I can do is to encourage you not to be too down-hearted. I have moved home recently so I have a new GP. I'm now having all sorts of problems but hopefully all will soon be well. I wish the same for you and everyone on this forum.

Good luck!

[CheetahGirl67 in reply to Hidden]

Dizziness can be the scariest thing because you feel out of control. I suffered for 2 yrs feeling like the room was spinning. It was one of the side illnesses of Fibromyalgia. I've been stable for years. Now to read that this med can cause it. At least I will know how to control it. You may want to go to Vestibular Therapy. Go to vesid.org to find an ent doctor that specializes in vestibular illnesses, that's the balance system. They will give you exercises to stablize your balance so the dizziness will go away. I don' t know whether it will help us or not because it's the Myco that's doing. It's worth a try. I'll let u know what's happening with me once I get started.

Cheetahgirl67

[CheetahGirl67]

Did u tell ur doctor? Those are some of the symptoms that the instructions from the drug company says you MUSY report RIGHT AWAY! Read the drug info from your pharmacy that they gave you or put Cellcept on the internet. Hope this help.