Jim's Fumaderm and hormone treatment

[jiml]

17 August 2015

Another month gone by and I feel I should have an update even though I have little to report

The Summer has been mixed here in Norfolk I have been lucky to not have to work and the few days of sunshine we have had I have been able to get plenty of sun on my skin ... Although my skin is virtually clear my legs are covered in scars and I have many lighter spots where the psoriasis was and the pigment is gone
This is not a bother to me and in the winter when the tan fades they don't show at all

My bloods have remained the same as last month so all is well  still on 4 fumaderm a day

One small thing I'm noticing is my feet are painful to stand on first thing in the morning I'm hoping it's nothing to concern me, but I will mention it when I visit my dermatologist at the end of August

As far as my prostate cancer goes my most recent blood test showed my prostate specific antigen (PSA ) was undetectable so I have nothing to fear there

[jiml]

29 August 2015

Yesterday I went to dermatology clinic to assess the way the Fumaderm tablets were working for me, clinic again running 45minutes late, but it was the end of the day and the receptionists were sitting watching the clock as much as we were, started the usual conversations " what times your appointment? " most of us had 4.30 appointments that were still waiting
Got to 5.15 and stood at the window and watched the red arrows display team fly past ( they had been parked at Norwich airport for the last couple of days .. Then flying off to do Clacton air show. But we had a great view of them flying off home in formation

Right the moment of truth go in to see the dermatologist
Looked at blood results from 4 August all within normal range  lymphocytes were at 1.2 so no change, ( normal is between 1-3) he seemed delighted with that
Liver and kidney function were both good, we discussed fumaderm and I pushed him and asked if there were many patients on it he said he had a few. I suggested that he might like to have a look at the forum. He said he would like that so I left him a psoriasis club card ( I always have a few in my wallet)
Dose he suggested keeping it the same 2x120mg tablets twice a day morning and night  
I asked do you want to examine me
He laughed and said you're wearing shorts and a teeshirt and sandles I can see your legs feet and arms... What else do I need to see
I talked of my sore feet in the mornings and asked could it be PsA he said very likely and the Fumaderm is controlling it well of thats the only joint problem I have  not to worry
So nothing exciting to report but no news is good news, I hope he visits here and points patients that struggle with a medication towards us where we can give more support than a once in 3 monthly visit to dermatology gives  

[jiml]

25November 2015

It's been a while since I put anything here although I have been vocal elsewhere on the site , I have had blood results from my October test but still waiting for November

The good news is there's no change in my lymphocyte count 1.25  and liver and kidneys still functioning well
A bit of flaking from my scalp, I'm noticing a fine dust on the inside of my glasses, I can't see where from but I'm guessing it my eyebrows... Really not a worry to me I can dab a bit of dovobet gel, sparingly if it gets worse.

More worrying is constant pain in my left shoulder, my fingers are a bit sore when I bend them, my feet are very painful when I get out of bed or stand up after sitting for a while
I'm hoping it's not the start of psoriatic arthritis

My finger nails are showing lines, pitting and splitting, and one thumb nail is lifting from the bed

.

 



They have always had the lines on and the split thumb nail never grows out
But now with the other thumb nail beginning to lift from the bed, I have to admit I'm getting a bit nervous that the Fumaderm may not be behaving
I have a dermatology appointment on December 4th so I will see what he has to say and see if my lymphocytes are better than 1.25, even if they are static. I may ask to increase the dose, to see if it eases my joints, we know it should work for PsA although it isnt prescribed for it.

In general I feel very well as soon as my feet get going, and the shoulder is more of a constant niggle apart from in the morning when I can't lift my left arm without pain

[jiml]

5 December 2015

Had a dermatology appointment yesterday afternoon , I was warned the clinic was running 15 minutes late, finally got in an hour after my appointment time , thank goodness they have free wifi so I could watch Fred playing with codes
I was due to go to a carol concert after the appointment but with the clinic running late I wasn't able to get a meal before the concert
Not even a bowl of soup



Anyway I got to see Dr Shah who has been seeing me for quite a while now we discussed my joint pain and he examined my fingers and toes and said there was no swelling, but he would refer me to rheumatology, so I must wait for an appointment for that now .

He was pleased with my skin and we looked at my blood results all looking good liver and kidney function normal.

LYMPHOCYTE COUNT UP TO 1.4

To say I was pleased is an understatement, he could see the joy in my face and he said they didn't prescribe enough of Fumaderm because of the red tape and because it is unlicensed
He told me that last week he was at a dermatologists conference in Manchester and they had a guest speaker from Ireland to talk about Fumaderm
. He asked how many were prescribing Fumaderm and very few raised their hands. He said they should embrace it as it was a good drug and in Ireland they are prescribing it regularly and the English doctors should start using more of it....
He said when the subject came up he thought of me and my love of the drug , because every time we meet I pump him for information
I left him a psoriasis club card and asked him to give the details to any sufferers that needed a support group.
He said that he would certainly give the information out  

[jiml]

8 January 2016

Today had a phone call from the hospital I think it's good news, I have an appointment with Rheumatology for the 21 st of this month to assess if I have psoriatic arthritis.... I say I think it's good news....but you know sometimes things are getting on nicely but you have niggling pains that you can happily live with....... Well that's about where I am, yes I wake in the night with pains in my shoulders,and if I step out of bed my feet are painfull to put flat....
This I can live with it doesn't affect me and a little pain at night is acceptable

My worry is my skin is great and has been for over 4 years now. I don't want a rheumatologist to stop my Fumaderm in favour of something else ..... I just don't want the psoriasis back    

I may well be wrong and I hope he will look and say you are getting old you must expect these pains... Then I will know what to do.....

At the moment I am following a regime with my Fumaderm after discussing it on here and reading a bit about it I am now taking my 2 x 2 Fumaderm tablets morning and evening with meals Monday to Friday. Then giving my blood a rest Saturday and Sunday and resuming again on Monday 2 tablets morning and evening.
I have only been doing it for three weeks and I haven't noticed my psoriasis or my aches getting any worse

The idea is that with continuous taking a medication your body gets accustomed to it and it becomes less efficacious. But taking a break and letting your blood recover should enable me to stay on it for longer as my body won't get too comfortable with it

I shall carry on like this and inform the hospital of the change on my next dermatology visit, although if the scales start to appear I will revert back to 7 days a week

My kidney and liver functions are well within the normal range my lymphocyte count is going up    now to 1.45 ( normal between 1-3)

I am going to the teaching hospital as a " patient " for trainee doctors to practice diagnosis on Friday so will be asking advice from the dermatology specialists

[jiml]

21 January 2026
Well I went to see the rheumatologist today but I will tell of that shortly first I will update on my Fumaderm dosing and blood results

My early January blood results my kidney and liver functions are all within normal limits and my lymphocyte count has improved again to 1.45. ( normal between 1-3)

At the moment I am still following a regime with my Fumaderm where  I am now taking my 2 Fumaderm tablets morning and 2 tablets in the evening with meals Monday to Friday. Then giving my blood a rest Saturday and Sunday and resuming again on Monday 2 tablets morning and 2 evening.
I have been doing it for 5 weeks and I haven't noticed my psoriasis or my aches getting any worse

Met the rheumatologist today a Doctor Hamilton, she gave me a good examination and looked at my shoulders feet and hands and said she would reserve judgement until I had some extra tests so had X-rays today and booked an ultra sound, for later ...will have to wait for an appointment for that
She was happy with me staying on Fumaderm as my bloods were good and I'm tolerating it well.

I asked if it did turn out to be PsA could I try upping the dose of Fumaderm. I explained that it should work on the disease, and if it didn't we could talk again ......it was decided not to make any decisions until the results were in, and made another appointment for July but said as there was room to increase the dose, it could be the first option

She did say it could be wear and tear and suggested as I wasn't in pain to get plenty of exercise and keep the joints moving

Gave her a card about the club so she might visit the club  

[jiml]

4 March 2016

Just had a reply after my appointment with the rheumatologist which suggests I have a form of arthritis
The reply is as follows

The ultrasound scan of your hands has shown no active inflammation , but you had erosions on the X-rays of your feet. This suggests there has been inflammation here, if not now then certainly in the past. I know your preference was to increase your Fumaderm dose before considering other medications . As you are aware Fumaderm isn't something I am familiar with, but I know you are due to see Dr **** again in clinic in a couple of weeks time so you could discuss increasing the dose then. I would point out however that there is no good data for using Fumaderm in psoriatic arthritis, and my preference would be to give you methotrexate.
Please let me know if this is something you would go back on . Otherwise I'll see you again in clinical planned

I haven't replied yet as I will try to gather information on Fumaderm supporting me staying on it before I respond
But there's no way I will go back onto the Methotrexate as I have had that experience and got over it

This morning I have been for a blood test and have got my latest levels which are 1.09 which is still within the normal range

My psoriasis score Is going up to 5 and I have put acouple of small plaques developing on my back I put this down to  being on intermittent dosing and missing my tablets at the weekends...

Today I have decided to abandon that experiment and continue to take my tablets 7 days a week
This coming weekend I will increase my dose to six tablets a day then on Monday I will revert to 4 a day and see what happens

I have a dermatology appointment in 2 weeks and will discuss the way forward regarding treatment and the possibility of increasing the dose, to deal with my arthritis as well as my skin

[jiml]

8March 2016

Today I have been to my doctor for my 3 monthly hormone injection, I hope I don't have many more of these to have
We had a discussion as he had seen a copy of the letter from the rheumatologist and he said I understand you are going to come off your current treatment.......Fumaderm

I said no it's not likely to happen unless the rheumatologist can give me a good reason to come off it.

We then had a discussion regarding Fumaderm versus Methotrexate.
He understood my point of view although he said I might have more difficulty convincing the rheumatologist

The good thing is my bloods are good and the lymphocyte count is up to 1.49
I am due to see the dermatologist on Friday and hear his opinion on how to progress with my treatment
I have a couple of plaques appeared in my right side they are small and no longer producing scales

11 March 2016

just got back from a meeting with the dermatologists " assistant " today  and he was reading through the letter the rheumatologist sent me .....he asked if we should do what the rheumatologist had suggested .....
What ...... I asked if anyone was listening to me ...and NO I am not going back onto methotrexate...he said where does that leave us, I said  why don't we try my suggestion and up my dose of Fumaderm and see if it works..( he scurries out to have a word with the boss the proper dermatologist) when he returns he waffles on about there not being evidence of it working on psoriatic arthritis ...... I said well there won't be if you pull the plug when it's suggested.....
I told him of the forum and people here on DMF treatments for PsA. But he was not prepared to raise my dose for fear of side effects...... I pointed out to him that I am having monthly blood tests and my levels are good and if I develop low blood count or increased creatinine we could reduce the dose as with Fumaderm all these effects are reversible........he wasn't listening ....his boss had told him one thing and he wasn't for shifting

I asked him where do we go from here? He said continue on my present dose till I see the rheumatologist in July or take methotrexate .....I said I would rather stick needles in my eyes... We agreed we weren't getting anywhere
So now I will wait for round 2 with the rheumatologist  in July
To be honest I came away a bit angry after the appointment being 50 minutes late, ...to then be put with someone who had no idea about me or Fumaderm and had to keep slipping out to ask the consultant what to do left me more than annoyed.
And no further forward than I was when I wasted the best part of an afternoon  

[jiml]

12June 2016
Been a bit lax with not posting since March but to be honest there hasn't been much change in my condition but I thought I would post this here although I have posted it on my Fumaderm and hormone injection thread

 I was at the GP surgery for my 3 monthly PSA ( prostate specific antigen) blood test and hormone injection. The doctor told me the the next injection would be my last  ( Big Grin big happy face to hear that) .as it will be two and a half years since I started treatment for the prostate cancer  .....and the blood test shows  the antigen as undetectable still which is brilliant news it means my prostate is behaving itself with no sign of the cancer returning

Also been for my monthly Fumaderm blood test and my levels are still good, my skin is still virtually clear after over 4 years on Fumaderm ... Still on 4 tablets a day
but the couple of plaques on the edge of my scalp which I have used a little dermovate gel on, And they are fading fast so not worth changing my psoriasis score


May blood levels

Neutrophils 4.53
Lymphocytes 1.42

So an improvement on last month ....I'm happy with those results

My kidney and liver functions were good and within normal levels..I won't bore you with all the figures
But kidney function >90

Creatinine level 71 (normal is 64-104]
All other readings are in the middle of normal...... if anyone wants a full list of the levels And what the normal levels are just pm me and I will send a  list

Booked my next hormone injection for my prostate cancer for next November ...

Generally feeling well haven't had any colds but am experiencing  a runny nose which I put down to the
High pollen  count
Managing to handle the stress of having Mrs Jim being rather ill for most of the year with haemolytic anaemia which I'm hoping may soon be over, and the next few weeks are going to be crucial

[jiml]

05 July 2016



Just been for my monthly Fumaderm blood test and my levels are still good,  ... Still on 4 Fumaderm  tablets a day

No real change from last month  


June blood levels

Neutrophils 4.99
Lymphocytes 1.27 a bit lower than last month but still well within the normal range

....I'm happy with those results

My kidney and liver functions were good and within normal levels..I won't bore you with all the figures


Creatinine level 79 (normal is 64-104]
All other readings are in the middle of normal...... if anyone wants a full list of the levels And what the normal levels are just pm me and I will send a  list


Mrs Jim seems to be over the worst of her haemolytic anaemia... Which was probably caused by dialysing her with tainted water that the filtration we had wasn't stripping the chloramine from the water coming into our house .......... We had Chlorine filters but they were letting the chloramine through ( that is now remedied )
Apparently the water authority  dose the water with chlorine, and if the concentration gets to high they put ammonia in to break it down ...creating chloramine .... So we are hopeful that her regular transfusions won't be needed again