Jims journey on Skilarence

[Kat]

Still no sign of my prescribed Enstilar I must ring the hospital and urge it up. Although I only have a little patch in my scalp behind my ear so not particularly urgent
Lymphocyte count today was 0.97 with the normal range between 1 and 3 it's only just below the normal and previous months are
January 1.15
February 0.95
Beginning March 0.92

So it would appear that  my lymphocytes are below the normal range and have been since my covid injections I don't imagine that the vaccine will have affected them but I'm putting it here as an observation. Apart from that my skin and joints are good, I'm still getting out most days for long walks taking photos weather permitting

Hope you get that sorted soon. But glad that things are still going well for you.

[D Foster]

I have one that I have not opened yet Jim. I , like y, just use it on my ears.

[KatT]

Hi Jim,

My lymphocyte count is low as usual.  The abnormality is in March this year when it went back to normal (I switched lupus medication in March), May and August 2018 when I was off the biologics due to a lupus flare.

June: 0.9
March: 2.5
September: 0.7 (seems I skipped a blood test...oops)
July: 0.8

I got 0.6s and 0.5s on previous ones.

[jiml]

Hi Jim,

My lymphocyte count is low as usual.  The abnormality is in March this year when it went back to normal (I switched lupus medication in March), May and August 2018 when I was off the biologics due to a lupus flare.

June: 0.9
March: 2.5
September: 0.7 (seems I skipped a blood test...oops)
July: 0.8

I got 0.6s and 0.5s on previous ones.

0.7 and the 0.8 are heading in the right direction KatT as normal is between 1 and 3 you are clawing your way back to the normal range . Your earlier .5 and .6 were a bit worrying and could have let in an opportunist virus in but you seem to have got back towards normal now
What do your doctor's say about the levels are they concerned ?

[KatT]

My rheumatologist is not concerned at all as it is caused by the medication and therefore normal that it's low.  Then again, my rheumatologist told me yesterday that having a pleural effusion and pneumothorax is just an inconvenience of lupus ?  should he be concerned if it gets too low?  I assume yes but what is considered too low???

He pays more attention to my liver and kidney function.  This is why he changed my medication at the beginning of March and the reason why I went back in the normal range.

At least I get the results the day after the blood test and consult Dr. Google as to what is normal and what abnormal results can mean....especially when something that was normal is now abnormal.

On the results site, I can even view the trend of the results which is nice and very useful  

[Caroline]

My rheumatologist is not concerned at all as it is caused by the medication and therefore normal that it's low.  Then again, my rheumatologist told me yesterday that having a pleural effusion and pneumothorax is just an inconvenience of lupus ?  should he be concerned if it gets too low?  I assume yes but what is considered too low???

He pays more attention to my liver and kidney function.  This is why he changed my medication at the beginning of March and the reason why I went back in the normal range.

At least I get the results the day after the blood test and consult Dr. Google as to what is normal and what abnormal results can mean....especially when something that was normal is now abnormal.

On the results site, I can even view the trend of the results which is nice and very useful  

I also have a spreadsheet with all my values, which is indeed very convenient.

What is too low?
0.7 is the low limit over here with us in the guidelines for dermatologists, it recently went up from 0.5 to this 0.7
0.5 is already very low.. 
0.4 is really on the edge 
0.3 is intolerable….. 

What happens if lymphs are too low? Well you will get vulnerable for viral infections, and the most dangerous one is the JC-virus.
…… no not the Jesus Christ virus, but the John Cunningham virus. This causes a viral infection in the brain, called PML, Progressive Multifocal Leukoencephalopathy, it is a BSE-like infection and may finally lead to death.
That is e.g. why everyone of the people on DMF have a regular checkup of their lympho’s, but e.g. people on MTX should have this checked also.

Most adults carry the JC-virus, but as long as you lympho’s are okay, that is that your immunesystem is working well, it can easily keep the virus under control.

[KatT]

Thanks Caroline     I didn't know that!  Will keep a closer eye on my lymphocyte count!  I definitely don't want the JC virus!

[jiml]

10 July 2021

Had face to face visit to the dermatologist today and was pleased to chat to him of the benefits of DMF as an effective treatment for psoriasis , he said that in view of my experience of the drug which he had no previous experience of with other patients.  he was  now offering it as an alternative to methotrexate to patients.  He did tell me that skilarence was more expensive than fumaderm and he asked pharmacy at the hospital if he could prescribe that and was told no as it wasn't licenced . He checked me out and was pleased with my skin I did point out that it has kept my psoriatic arthritis generally pain free.  although I did show him some sun damage on my forehead and he used cryotherapy using liquid nitrogen  to freeze off an actinic keratoses. .... I'm just glad it wasn't anything sinister
My bloods are good with my lymphocyte count at 0.95 he has asked to see me again in 3 months.
Ohhh and I finally got a prescription for enstilar foam

[D Foster]

That's great news Jim, my next appointment has been moved to February next year, I think that it was February.
Will it get back to normal.

[Caroline]

10 July 2021

Had face to face visit to the dermatologist today and was pleased to chat to him of the benefits of DMF as an effective treatment for psoriasis , he said that in view of my experience of the drug which he had no previous experience of with other patients.  he was  now offering it as an alternative to methotrexate to patients.  He did tell me that skilarence was more expensive than fumaderm and he asked pharmacy at the hospital if he could prescribe that and was told no as it wasn't licenced . He checked me out and was pleased with my skin I did point out that it has kept my psoriatic arthritis generally pain free.  although I did show him some sun damage on my forehead and he used cryotherapy using liquid nitrogen  to freeze off an actinic keratoses. .... I'm just glad it wasn't anything sinister
My bloods are good with my lymphocyte count at 0.95 he has asked to see me again in 3 months.
Ohhh and I finally got a prescription for enstilar foam

Good alternative offering….

Yes, because of the registration it became more expensive. Makes a bit of sense.
Fumaderm has never been licenced, nor has Psorinovo.
It remains incomprehensible that Skilarence doesn’t come with a slow release version. They would conquer a very big part of the market, unfortunately they are too stubborn to see that.

Good lympho count !!