[split] the end of ciclosporin....the beginning of fumaderm

[Chris]

I started with psoriasis in 1974 and had it in most parts of the body since, including neck, round the eyes, ears and scalp which I always find the most distressing.  I am lucky whilst my psoriasis has been extensive in attacking parts of my body it has taken many areas in turn.   In 2013 I started with Fumaderm and used it for 18 months and became symptom free, my tablets were 3-4.  My lymphocytes count was never brilliant before taking Fumaderm but did drop and stabalise at around 0.6.  Suddenly they started to drop and I had a call from the hospital asking me to stop as they my count was 0.2.

As a result of the low lymphocytes I was referred to a immunologist who I saw 3 times in 18 months and wanted to monitor the return of my count to acceptable levels, in my case 0.8-1.0.  I had no treatment except a pneumonia injection and recommendation for a flu jab.

In my case the return of psoriasis was very slow, in fact it was around 18 months before I felt the need to use any treatment.  Unfortunately I now have it on the soles of my feet and one nail is heavily infected with it.  My GP referred me to a consultant and I asked to return to Fumaderm and he agreed if my blood count was OK.  Which it was and I have gone onto 120 mg immediately.  Within hours I had the bloating, heating (which I had almost forgotten) and diarrhoea (which I hadn't forgotten)....................it brought a smile to my face as it felt as if it had started working.   I am lucky I can stay round the house most of the next few weeks, I am hoping that the Fumaderm will work fairly quickly and that I can go on a very low dosage or even once it has cleared stop the medication for a time and then go back on it.

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Edit By Fred: I'm not sure what happened with this post but I'm prepared to give it the benefit of doubt as I'm not convinced it was spam.

I'll split this and give it a new thread, I will also send the new member a PM to explain where their post is in this new thread.

[Caroline]

Hi Chris,

Welcome to Psoriasisclub.
You jumped in with a reply on a post, I have seen.
Now your registration is through you have your own thread.
We, not only me but more of us, are very curious on how you will do on the Fumaderm, certainly as it has been good for you already.
Indeed keep an eye on your lymphocytes count, 0.6 is fine, 0.2 is definitely too low, so smart that you stopped.

Did you know that the intermittent use of Fumaderm, or DMF as we used to say, gives better results?
See the posts of Bill.

Cheers,
Caroline.

[jiml]

I started with psoriasis in 1974 and had it in most parts of the body since, including neck, round the eyes, ears and scalp which I always find the most distressing.  I am lucky whilst my psoriasis has been extensive in attacking parts of my body it has taken many areas in turn.   In 2013 I started with Fumaderm and used it for 18 months and became symptom free, my tablets were 3-4.  My lymphocytes count was never brilliant before taking Fumaderm but did drop and stabalise at around 0.6.  Suddenly they started to drop and I had a call from the hospital asking me to stop as they my count was 0.2.

As a result of the low lymphocytes I was referred to a immunologist who I saw 3 times in 18 months and wanted to monitor the return of my count to acceptable levels, in my case 0.8-1.0.  I had no treatment except a pneumonia injection and recommendation for a flu jab.

In my case the return of psoriasis was very slow, in fact it was around 18 months before I felt the need to use any treatment.  Unfortunately I now have it on the soles of my feet and one nail is heavily infected with it.  My GP referred me to a consultant and I asked to return to Fumaderm and he agreed if my blood count was OK.  Which it was and I have gone onto 120 mg immediately.  Within hours I had the bloating, heating (which I had almost forgotten) and diarrhoea (which I hadn't forgotten)....................it brought a smile to my face as it felt as if it had started working.   I am lucky I can stay round the house most of the next few weeks, I am hoping that the Fumaderm will work fairly quickly and that I can go on a very low dosage or even once it has cleared stop the medication for a time and then go back on it.

Hi Chris nice to have another Fumaderm user on board so let me as a Fumaderm user welcome   you to the club and hope that you enjoy being with us, this is a very friendly forum with a mix of members from around the world all sharing experiences of this awful disease......it's a shame your lymphocytes dropped so low and you were wise coming off the Fumaderm. Although I'm glad your bloods have recovered sufficiently to restart the treatment
It's good you knew what to expect when you restarted the drug....and yes I suspect you are right that the substance is affecting your body causing the side effects and hopefully working on the disease

A brave move going on to 120mg as a starting dose although if you have been on it before it might be a smart move

I look forward to reading here on how the Fumaderm continues to work and hope it works well on your feet and nails
Good luck
Jim

[Chris]

Thank you Caroline and Jim.

As I said in my original post I started on 120 mg per day, having previously been on Fumaderm.

This second time on Fumaderm the treatment has worked fairly quickly.  I had started to have psoriasis across my chest and within two to three weeks this was virtually clear.  Round my ears, eyes and neck I am clear.  With the plaque on my elbows getting less.  My feet remain a problem and hopefully in time they will improve, after all it is only two months.

My blood count had gone down and I am worried that this might have me taken off Fumaderm again - I hope not.

What I would like ideally is to get clear and then have a break from the drug to allow the bloods to get better.

I am taking my one tablet last thing at night and have had fewer hot flushes - I am probably sleeping few some!

[jiml]

Hi Chris good to see you back, you say your blood count is Low .....do you know what your lymphocyte count is and what it was before you started,
If you can find what your lymphocyte and neutrophil counts are you will be able to see the trends for yourself
Usually if your blood count is Low cutting the dose will reverse the trend if it's Low try taking one tablet every other day until they come back in the normal range rather than stopping ...unless the level is really Low

I hope you are able to stay on it as you know how successful it can be, and I hope it clears your feet soon

Jim

[Chris]

Hi Chris good to see you back, you say your blood count is Low .....do you know what your lymphocyte count is and what it was before you started,
If you can find what your lymphocyte and neutrophil counts are you will be able to see the trends for yourself
Usually if your blood count is Low cutting the dose will reverse the trend  if it's Low try taking one tablet every other day until they come back in the normal range rather than stopping ...unless the level is really Low  

I hope you are able to stay on it as you know how successful it can be, and I hope it clears your feet soon

Jim

Hi Jim

Thanks for your reply.

My lymphocyte count was down to 0.2 when I came off Fumaderm in the summer of 2014 and it took 18 months to get to 0.9.  I haven't been above 1.0.  In fact my dermatologist at the time referred me to an immunologist.  Basically it was a case of waiting, but I was told if I felt ill to go and see them and they would treat me with intravenous antibiotics which had been developed for those suffering with HIV+.  However we didn't go down that root and the count slowly improved.  I think my count on 16th was 0.7 and I have been asked to have fortnightly blood tests.  If I am lucky I will be able to have (say) six months on the treatment and then take a break.  I had a anti-pneumonia jab last year and I have been having flu jabs each year in order to protect my immunity.

What was interesting the immunologist request blood test that profiled all of my blood counts in detail, not just the broad details of Lymphocytes and she looked at the component parts to see if anything was contributing to the low count, but nothing was obvious. 

I have always been susceptible to the common cold and my psoriasis is always worse when I have one.  What was interesting to me during my first period on Fumaderm was that despite my fall in the lympocyte count I was relatively free of colds...................which seems at olds with how it should have been. 

My platelets was also marginally below the range, which again is normal for me.

[jiml]

It's strange if took so long for your blood to recover to 0.9 and now it's dropping again ..what a shame ....I hope it doesn't drop too low again

Yes it's odd even when my counts were low I still rarely pick colds up ...but I do have the flu jab

I think the lowest I have dropped to with lymphocytes is 0.7 then I reduced my dose from 4 to 3 tablets a day and the count recovered in about a month to over 1 I'm currently on 5 tablets a day and my lymphocyte count is 1.25 ...I have blood tests every month now and record the values in my journal which you will be able to see when you have 10 posts under your belt

[Caroline]

The same for me, I rarely have a cold when on DMF.
My doctor says that could mean two things, one that still the immune system does its job quite I even with low lymphocytes it is very effective or two the immune system just does not "see" the cold and ignores it.
I don't know if I like the last explanation.

[Bill]

Hi Chris,

I have had a couple of nasty colds on DMF, but I did not have regular enough blood counts to pinpoint potential culprits. I did have low d3 at my last count, so I now make sure I get enough sun. It might be the case that a long time with inadequately treated psoriasis left me run down and vulnerable. I feel much healthier these days and am hopeful that future colds will be far milder.

I pre-dose with cysteine to reduce the gastric side effects of DMF, but I have no idea whether it would help you.

Cheers,

Bill