Anyone else on Mycophenolate with no spleen?

[NickyD]

Hi

I had my spleen removed as part of the treatment for ITP and I take both penicillin and mycophenolate twice a day. Mycophenolate is an immunosuppresant. As a result I am a priority case for flu jabs each year. When i have a flu jab i am really unwell for a month. So, last year i decided not to have the flu jab and was unwell for 4 months. Havent had the flu jab yet this year but have had a reminder letter from the Dr. Is anyone else in this position? Not being well for a month is not much fun, but not being well for four months is worse.

I have a cold at the moment and am getting fed up with it not going. Reaching out to anyone else that feels fed up with not being well.

NickyD

[Ltinny]

Greetings. I am on mycophenolate, but I do have my spleen. I always get a flu jab every year for the past 20 years. I get achy and fatigued for a few days after the jab, but I take Tylenol and it seems to take the edge off. After that passes I am fine. I'd rather put up with short-term ailments than long term. I would follow your doc's advise and get the flu jab. It is better to be protected than not, especially with no spleen. Hope this helps and take care.

[NickyD in reply to Ltinny]

Thanks for the reply. My Dr does not have a lot of faith in the flu jab and when I talked to him last year about not taking it, he said it was up to me. I will book an appointment to get it done.

What is Tylenol, where do you get it and how do you take it?

[Ltinny]

Tylenol is acetaminophen, an over-the-counter pain reliever. I always take that for aches and pains b/c my platelets are too low to take aspirin or ibuprofen. It helps alleviate that flu-y feeling I get for a few days after my flu jab.

[NickyD in reply to Ltinny]

That is really interesting because i dont take any cold remedies or pain killers either, apart from paracetamol, when i have to. The rest I dont touch because of the downward pressure on the platelet count. Do i have to be careful how much i take and how often? Never done this before so dont really know what is best.

[Ltinny in reply to NickyD]

I have lupus and therefore have pain constantly in different degrees on different days. But still, I only take Tylenol when I absolutely cannot stand the pain. Most days I don't take anything except my rx meds which are not pain meds. I either try to do stretching exercises or get a little extra rest. Tylenol can be detrimental to your liver or kidneys, but that is when it is taken in excess. Just follow the instructions for dosage on the package, if you abide by that there should be no problem.

Like I said, I only take even over-the-counter pain meds when I absolutely can't stand it. One of those times is after my flu jab, because I feel miserable for about 48 hours. Hope this helps

[NickyD in reply to Ltinny]

That is really helpful thanks. Take care. N x

[lc12345]

I have no spleen and was taking MMF for a couple of years. I was always refusing flu jabs - I have strong opinion about them not being effective enough but also I know they may cause ITP relapse or make it worse. So I always avoided them. I also have CVID which is immunodefficiency that was diagnosed recently and is likely reason for my ITP. I get colds very often because of it and they may last weeks. Interestingly, I've managed to stop last two episodes of cold by using First Defence spray at first signs. It stayed very mild ad never developed.

[NickyD]

What is First Defence spray? Never heard of it?

[CIN1201]

Good afternoon NickyD. First of all let me start by saying i know the frustration that you are going through since i too basically go through the same thing. I was 1st diagnosed when i was 17 and they decided to do a splenectomy. After surgery and being put on prednisone my platelets went up back to normal. 20 years later i relapsed. Now being that I don't have a spleen to help process, according to my doctor, nothing seems to be helping me and i refuse to go back on prednisone. I cannot handle ALL of the side effects with it plus my mental state is way off when i take it. I am currently on Nplate. Even though my numbers are still in the single digits i am "stable". I know that sounds weird but my specialist said that maybe my body has adapted to being at such a low number. I no longer have nose bleeds or bleeding gums and the bruises are very tiny where they use to be the size of my fist. I still get some petechiae but not as much as i use. Truthfully i do alot of experiments with my diet and i did notice being back at the gym has helped me feel better too. I know its not much but i hope it helps you a little.

[NickyD in reply to CIN1201]

Hi CIN1201 Lovely to hear from you. I think we all have to work on what is best for ourselves. I hated being on a high dose of steroids for months on end. I would go to bed at 11pm and get up at 2am to start my day. I was irritable, unreasonable, neurotic, unstable, unpleasant, nasty and couldnt stop eating. I put on five stone in weight only to find that the treatment did not help my ITP. You can only understand how a awful high dose of prednisolone is when your have experienced it. I remember the pharmacist at the hospital refusing to give me my prescription without checking with the consultant first, because she had never seen such a high dose being prescribed before. We live an learn. Take care. Nicky

[CIN1201]

My dear NickyD i can so relate. I did tell my specialist that i refuse to go back on prednisone. I just realized i didn't answer you initial post about mycophenolate and a splenectomy lol. Yes i have been on it and it didn't do anything at all for me but i did feel quite nauseous and couldn't sleep properly. I really wish there was a cure, or at least something that would help. I'm actually considering to try the keto diet as i have heard alot of positive things but still doing my research. Will keep you posted on anything that i come across, considering nothing that is written in the books works for me lol. Have a good one