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Jim's Fumaderm and hormone treatment

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Jim's Fumaderm and hormone treatment
jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#41
Thu-21-07-2016, 12:26 PM
21 July2016

Today just a note to remind me in future to heed Bills warning about eating bananas. Up till now I've never had a bad effect from eating them

A few weeks ago we started making fruit smoothies as a way to enjoy fruit,
Strawberries ,raspberries ,melon , Apple, pear, and mangos have all been blitzed into great tasting smoothies

2 weeks ago I added bananas to the mix....and have had trouble ever since, most days I have suffered awful cramps and had to make a dash for the toilet more than once

So I'm putting it down to the bananas and leaving those out of the smoothies to see if the pains disappear
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jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#42
Sat-10-09-2016, 16:18 PM
10 September 2016

After visiting the rheumatology at the hospital and rheumatology said they were happy resigned to the idea of me increasing my Fumaderm as long as the Dermatologist was agreeable although they both have said there is no evidence of it having any effect on psoriatic arthritis,
My dermatologist has written to them saying he had no objection .
So as I had enough tablets to get me through to the next appointment I decided to start before getting the official nod from my dermatologist, I want it to have a chance to work before I go back to rheumatology as I asked them to bear with me for 6 months and if it didn't work I would have to change to something else

Ten days ago I increased my dose to 5 tablets a day for I week then 3 days ago I increased again to 6 tablets a day 3 with my breakfast and 3 with my evening meal

I have noted a bit more flushing of the face and body but no additional cramps

My bloods were good when I started to increase with lymphocytes 1.35 so will be interesting to see my next blood results that were taken on the first of September

I don't want to tempt fate but I'm sure the pain in my fingers is markedly less my feet don't hurt when I get up in the mornings, and my shoulders don't ache ache as much.
It might be my imagination or wishful thinking but at the moment I'm thinking it might be working    
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jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#43
Fri-21-10-2016, 18:59 PM (This post was last modified: Fri-21-10-2016, 19:04 PM by jiml.)
21 October  2016

Went to see my GP 3 weeks ago  to have my last hormone injection so I'm hoping normal service will resume soon, that's two and a half years since I finished my Radiotherapy for my prostate cancer
I was pleased that my blood test for prostate specific antigen ( PSA ) was undetectable
So for my prostate cancer I now go to just 3 monthly blood tests to make sure it doesn't creep back
But no more damn hormone injections  Big Grin

I was told my lymphocyte count was good from the beginning of of September at 125 so it was well within the normal range, took more blood at beginning of October

Having increased my dose of Fumaderm to six tablets a day 3 with breakfast and three with my evening meal I was a bit concerned that the lymphocyte count would fall again but my doctor took my bloods while I was with him.
I told him that I had increased my dose of fumaderm to 6 tablets a day and need to keep an eye on my lymphocytes,

Later that evening I got a call from my doctor telling me he had the results of bloods and unfortunately they had dropped to .95 not dangerous at that level but non the less the rapid drop from 1.25 to .95 in under a month has caused me to reconsider the increase and have dropped down to 5 tablets a day and am due another blood test in a few days ....it will be interesting to see the results before I have to see my dermatologist in December

I have noticed since dropping to the lower dose that my finger joints are getting more painful ...but I'm still reluctant to give up on Fumaderm  unles I'm offered something to deal with both problems like stelara or Cosentyx     
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jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#44
Thu-03-11-2016, 13:02 PM
3 November 2016

Went to have a blood test Monday  this week as my last results the lymphocyte count had dropped  to .95.....not too worrying as it was only just out of the normal range.......So I was delighted this morning when my GP phoned and said guess what your lymphocytes have recovered and are back up to 1.23 a great result

I will continue on 5 tablets a day as my psoriasis is well under control and I only have a tiny patch on my left elbow
The arthritis is not too bad the finger joints are a bit tender and my feet are less painful when I get up in the morning so I will try to stick to this medication as it has been so good to me for the last four and a half years  
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jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#45
Sat-19-11-2016, 21:29 PM
Went to dermatology last week and my lymphocyte count was up to 1.35 which is great news, ( normal is between 1-3 so I'm comfortably in the middle  my liver and kidney function was good ...I had a long wait in the clinic as there was a shortage of staff and despite them changing my appointment 3 times before I went I still had to wait over an hour and a half to see the dermatologist who had nothing new to tell me she never looked at my skin, I had to tell her what the previous dermatologist had said, which was I could try increasing the dose of Fumaderm as my bloods were good ....I told her I did a gradual increase from 4to five and two weeks later increased to six as my bloods were good ...I told her after being on six for about 3 weeks my lymphocyte count had dropped to .95 ...it's acceptable but I would rather be cautious and see the numbers up a bit...so I reduced the tablets to 5 and my blood recovered to where it is today 1.35.... she scribbled some notes gave me a prescription and said carry on

She did ask if the increased dose was helping with the psoriatic arthritis I said I felt it was and with that the consultation was over
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JohnB Offline
I wanted to be an Engineer when I grew up, but was told I could'nt do both

100 + Member I Just Cant Stop !
Posts: 4,725
Threads: 36
Joined: Jan 2016
Gender: Male
Location: Lancashire UK
Psoriasis Score: 10
Psoriatic Arthritis Score: Hmm Maybe
PQOLS: 5
Treatment: Otezla/Apremilast & Enstilar occasionally.
#46
Sat-19-11-2016, 21:58 PM
yeahhhh! Clap  We can talk to Jim.

These sort of appointments drive me mad. I dare say they dont mean to give the impression of irrelavence but the Dermy Doctors over here are so pulled out. We could do with an awful lot more.
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jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#47
Sat-19-11-2016, 22:06 PM
(Sat-19-11-2016, 21:58 PM)JohnB Wrote: yeahhhh! Clap  We can talk to Jim.

These sort of appointments drive me mad. I dare say they dont mean to give the impression of irrelavence but the Dermy Doctors over here are so pulled out. We could do with an awful lot more.

Thanks John this is a nice idea ...I always wanted to keep my journal clean but it's nice to have a clean journal and another one that can be commented on Thumb
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#48
Sat-19-11-2016, 22:15 PM
(Sat-19-11-2016, 22:06 PM)jiml Wrote:
(Sat-19-11-2016, 21:58 PM)JohnB Wrote: yeahhhh! Clap  We can talk to Jim.

These sort of appointments drive me mad. I dare say they dont mean to give the impression of irrelavence but the Dermy Doctors over here are so pulled out. We could do with an awful lot more.

Thanks John this is a nice idea ...I always wanted to keep my journal clean but it's nice to have a clean journal and another one that can be commented on  Thumb

Just don't forget to let me know of you want posts moved to the locked copy.
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jiml Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#49
Sat-19-11-2016, 22:21 PM
(Sat-19-11-2016, 22:15 PM)Fred Wrote:
(Sat-19-11-2016, 22:06 PM)jiml Wrote:
(Sat-19-11-2016, 21:58 PM)JohnB Wrote: yeahhhh! Clap  We can talk to Jim.

These sort of appointments drive me mad. I dare say they dont mean to give the impression of irrelavence but the Dermy Doctors over here are so pulled out. We could do with an awful lot more.

Thanks John this is a nice idea ...I always wanted to keep my journal clean but it's nice to have a clean journal and another one that can be commented on  Thumb

Just don't forget to let me know of you want posts moved to the locked copy.

Oh yes I need post it again for you to move Doh
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Bill Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 1,624
Threads: 6
Joined: Dec 2012
Gender: Male
Location: Queensland
Treatment: Dimethyl fumarate
#50
Sun-20-11-2016, 11:11 AM
It makes me wonder about the dynamics of lymphocyte populations in relation to DMF, Jim. Caroline says that the count is knocked down initially but eventually increases. You seem to have done this, and hopefully the status quo will remain and allow you to keep your arthritis at bay. I hope I can follow in your footsteps, but I have been amazed by how useful the sun has been. Kind of like a buy two get one free deal with my DMF doses.

Cheers,

Bill
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