Fumaderm and kidney problems

[krug22]

Unfortunately, Nephrologist took him straight off the pills. Arranged to try to speak to Dermo via phone yesterday but when I phoned late morning - his clinic finishes at noon, I was told he had cancelled!
Still do not have blood and urine latest tests results so frankly I do not feel able to put him back on Fumaderm even half dose, having been told by Nephrologist to take him off.

So now we have an Easter Weekend a GP who does not want to know as he says Eric is being treated by specialists and me terrified of a flare up - his ankles and feet look quite red.....

Also worried that he has been on the Fortisips high protein shakes and this could really cause problems if his kidney function has gone down further.  I really need latest results so I can at least try to contact the dietician and see if she is ok about him continuing to have the drinks - at the moment he is actually buying his own to add to the persription ones  which could be mega dangerous if his kidneys are struggling to function.  
 Cannot understand why it is so hard to get blood/urine tests results.....
I think we may have to see if PALS can help - our GP closes Thursday PM until Tuesday and it would appear I cannot get hold of Dermo until then.

What really worries me is that if he has a flare up, it can take some pills up to 12 weeks to work and I really want to prevent this happening.
Why oh why do not consultants talk to one another?
I do understand the GP's position but it really does not help us.
I do not want to end up in A and E on a bank holiday weekend.
Thanks for listening - not a happy bunny right now - feel I am banging my head against a brick wall to get the best out of the NHS. I have done media work and been involved in my own company so consider myself fairly articulate but what about those who have no one to fight for them!
Rant over - will go and feed the cats now!

[Bill]

It sounds like a very complicated problem and I agree with your sentiment of not wanting to do things against the direction of the specialists. The GP is not in an easy position either. And I take it that Eric was offered a bio but refused it? Hopefully he will receive an effective treatment soon.

From reading this thread I thought a lot more of the importance of good hydration when taking DMF. Consequently I found that drinking several glasses of water a few hours prior to dosing reduces my side effects considerably. I thank you for this.

[krug22]

Sorry what do you mean by Bio? Biopsy? Yes Eric has had those to diagnose the Lupus then when the psoriasis came into play he had another one and I think that confirmed that the Lupus was present but 'dormant'.

I agree GP in a difficult position and usually he is ok - moving premises end of Month so whole team rather stressed. I will suggest Eric drink plenty of water and see if that gets us through the weekend.... The only thing Eric actually was mega ambivalent about was the 'injections' but he did not refuse them and they were offered as an option if the Fumaderm did not work. I do realise our case is maybe more complicated than a lot, but by sharing experiences then hopefully it will help.

Loved the cats thread! I breed Norwegian Forest Cats and they quite literally keep me sane at the moment!

[jiml]

Bio here means biological drug. Humira, Enbrel or Stelara

[Bill]

Yes, I meant biological treatment. Thanks for clarifying Jim. Sorry for the abbreviation.

[krug22]

Yes, I meant biological treatment. Thanks for clarifying Jim. Sorry for the abbreviation.

Sorry - mega blonde senior moment!

[jiml]

Yes, I meant biological treatment. Thanks for clarifying Jim. Sorry for the abbreviation.

Sorry - mega blonde senior moment!

No problem I have those all the time ....and I'm not even blond

[jiml]

If you ring dermatology and ask them for latest results ( they are yours, not secret) the secretary should be able to tell you white blood count, red blood count, lymphocyte count, kidney function, liver function etc
Then you can make a decision or at least know Eric will be ok until he sees the derm

[krug22]

Finally  got hold of dermo today. Basically he wants to refer Eric for injections - did not say which ones, at the hospital but in the meantime, he is to go back onto Acitretin which he was on early last year. It did not control the psoriasis which was why they tried Eric on Ciclosporin and then Fumaderm. Thankfully we have some left over until I can arrange to collect the prescription from the hospital.
He has not had a flare up yet so the Acitretin may just keep the psoriasis under control - we have an appointment on 22nd April and we will keep this unless we get an appointment for the injections through in the meantime. In a way, I hope we do not, as I would like to ask a few questions first. 
I would imagine the letter will give details of what the injection comprises on but would really appreciate feedback from anyone on injections. I was told last year that it would be a last resort if the Fumaderm did not work.
I do not think Eric will refuse injections although I do not think he will be very happy! He also has Lupus and it is very important we control this.
He literally could not walk this time last year plus he had infections due to the sores so we have to go for the injections I feel.
I cannot research until I know what he is going to be put on but I gathered from my initial conversation that it is regular visits for several weeks or even months.
Thanks for listening - very out of my depth frankly but you are a lovely group of people.

[Fred]

The injections are (apart from Remicade) a small injection under the skin. It's a simple and painless process. He will be shown by a nurse how to do them, and once he and the nurse are happy he will be able to do them himself (or you could do them for him). It's a very small needle and you just need to pinch an inch of skin (usually around the belly or top of the leg) the injection itself goes just under the skin and the treatments come in pre-filled syringe or a type of automatic pen.

They are classed as a last resort because they must go through the protocol of oral treatments first. This is mostly down to the cost involved, but more and more people are getting them these days as they are proven to be very effective with very little long term problems.

There's currently 7 Bio's used for psoriasis and/or psoriatic arthritis and more in the pipeline. 6 are by injections under the skin and 1 (Remicade) is given intravenously under a day visit to the hospital.

You can read more about them here: Biological Treatments For Psoriasis

I'm a big fan of the Bio's as they gave me back my life. It may take a while to find the right one for him but the majority of people do very well on them.