Jim's Fumaderm and hormone treatment

[jiml]

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

Yes I don't know the mechanics of the way the lymphocytes work in relation to the treatment but with the close monitoring I get it's easy to modify the dose to keep the lymphocytes at a good level and my psoriasis virtually undetectable ...apart from the white scaring which is more apparent in the summer as in the winter my legs are white anyway
I'm like you Bill and have put my faith in DMF which has certainly been a life changer for me. But old habits die hard and I used to rely on what little sun we get here to combat my psoriasis and in the summer you will rarely catch me in anything but shorts while the sun is out. I love the feel of the sun and it is a great help and I'm sure assists the DMF

[jiml]

21 January 2017

Today I had a telephone call from my Dermatologist telling me that my blood count was still good with a lymphocyte count of 1.25 normal being between 1and 3

But because of a notification he has received of a risk of the rare brain disease PML being linked to DMF drugs  he has asked all Fumaderm users to have an MRI scan to see if there is  any sign of damage ...This doesn't overly concern me as I suppose it should show there isn't a problem
I am waiting for an appointment to have that test

I then went to see my Rheumatologist so she could look at my arthritis  and see if there is any improvement since I increased the dose of my Fumaderm ...she looked at my joints and we agreed that there was no point in changing if I was coping...and it was not getting worse

She offered me Methotrexate again with a smile on her face knowing my reaction she then said if it does flare up I could go on to sulfasalazine, I asked about my psoriasis and she said the sulfasalazine would not work on that and I would have to stop the Fumaderm

She agreed it was a box ticking exercise to enable me to get onto a biological if the worst came to the worst
She said I need to fail on one other treatment before I can get onto a biological.

We both agreed that I would stay in touch via the dermatologist and only go back if the arthritis got bad and I needed to change...... On that positive note we parted company and will continue on Fumaderm unless the arthritis strikes me hard

[mataribot]

PsA typically hitd hard and heavy and tapprrs off. So let's just hope the worst is gone. I think it's funny that they insist you fail a treatment that by definition you have already failed.

[jiml]

PsA typically hitd hard and heavy and tapprrs off. So let's just hope the worst is gone. I think it's funny that they insist you fail a treatment that by definition you have already failed.

Hi matari thanks for your thoughts, over here if we have psoriatic arthritis we have to have failed on at least 2 oral treatments. I have only failed on one Methotrexate, so I need to fail on another like sulfasalazine to qualify for a biological drug, and have at least 3 swollen joints, she did say I only need to be on the next one a month and if it fails I can move straight on it's a box ticking exercise to do with the protocol of being seen to work their way through treatments ....I'm afraid it just comes down to money

But at the moment I'm happy on my current Fumaderm which I feel is keeping it in check

[mataribot]

Sulfa is just a horrible drug... it's like eating a bottle aspirin.

[jiml]

Sulfa is just a horrible drug... it's like eating a bottle aspirin.

Yuk I'll look forward to that ...she did mention another I could go on but I wasn't paying attention by then I just wanted to get out as I wasn't going to try anything for the foreseeable future

[mataribot]

You did the correct thing by ignoring what the other was

[jiml]

You did the correct thing by ignoring what the other was

[Fred]

You're coping well with the psoriatic arthritis so stay as you are. You have very mild psoriatic arthritis, when you can't move and you get locked up then think of changing.

Having an MRI for loosing me smell was when they found the lump on my brain, so it's worth having it done even just to get the all clear.

[Bill]

Harder in Australia, Jim. I really am flummoxed by Belinda's claim that it was easy to get treatment here, especially as she had an anaphylactic reaction with one treatment. As you can read, it is compulsory to go through at least six months of hell to qualify, and Cosentyx got pulled from the list last October. No thanks. It is much easier self-medicating and being a guinea pig than dealing with these clowns.

<To qualify for PBS authority approval the following conditions must be met.
The patient:
is an adult with severe active psoriatic arthritis
and the patient has not received any PBS subsidised treatment
with adalimumab, certolizumab pegol, etanercept, and/or
golimumab, infliximab, secukinumab or ustekinumab in this
treatment cycle

has failed to achieve an adequate response following a
minimum of 3 months treatment with:

Methotrexate, at a dose of at least 20 mg/week

and
Sulfasalazine, at a dose of at least 2 g/day

or
Leflunomide, at a dose up to 20 mg/day

Provide details on contraindications or intolerance to any of the
prior therapies including the degree of toxicity.
Intolerance must be of a severity to necessitate permanent
treatment withdrawal.
Contraindication or toxicity and grade
Methotrexate:

Sulfasalazine:

Leflunomide:

The patient can demonstrate failure to achieve an adequate
response to current treatment by:
an elevated ESR greater than 25 mm/hr

and/or

an elevated CRP greater than 15 mg/L

and

an active joint count of at least 20 active (swollen and
tender) joints

or
at least 4 major active joints: elbow, wrist, knee, ankle,
shoulder and/or hip.

Note: Where a patient has at least 4 active major joints and less
than 20 total active joints at baseline, assessment of the major
joints only will be used for all continuing applications.>