Wed-29-04-2020, 21:25 PM
Thank you
Jims journey on Skilarence
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Wed-29-04-2020, 21:25 PM
Thank you
Wed-29-04-2020, 21:27 PM
Tue-05-05-2020, 15:30 PM
Did the increase help Jim?
It's good that you know when and how to increase your dosage. Hoping you're sleeping better again.
Tue-05-05-2020, 21:58 PM
Thanks Kat yes the arthritis has calmed down nicely after 6 days of putting the dose back up to five tablets a day I'm enjoying sleeping again as the pain in my shoulders has decreased so much
Wed-06-05-2020, 08:34 AM
Great way of “tuning” with Skilarence, jim !
Wed-06-05-2020, 11:47 AM
I'm intrigued Jim. Is this tuning being done off your own back or is this something you discussed with your Dermy.
I generally get the feeling mine takes a dim view when if comes to self experimentation
Wed-06-05-2020, 15:13 PM
It is kind of a slow reacting volume knob you are turning.
If the psoriasis comes up, you increase a little. Then, because of the moderating effect the activity will go down again, and then you can decrease again a bit. All the time, you need to check your lymphocytes at regular intervals, certainly when going up as the lymphocytes will go down a bit in reaction and have a minimal bottom line where you need to stay above. Jims levels are very good, so for him it is easy to turn the knob higher if necessary. The trick is to find the exact amount of medicine where you will stay stable. But that may be quite difficult as there are often external factors, the weather for instance, or a cold, or whatever, that will push to that stability.
Wed-06-05-2020, 16:07 PM
It's a very strange medication, when I mentioned it to my dermatologist a few years ago I got the impression that he wasn't too keen on it.
Wed-06-05-2020, 16:22 PM
(Wed-06-05-2020, 16:07 PM)D Foster Wrote: It's a very strange medication, when I mentioned it to my dermatologist a few years ago I got the impression that he wasn't too keen on it. That is because he has no knowledge of it. I see that often over here. Recently spoke with a rheumatologist, specialised in Psoriatic Arthritis, and asked him why they didn't use the fumarates. His answer was that he had "heard" that it dit not work for Psoriatic Arthritis, well to my idea that is the most strange answer he could give. Normally they are all about scientific research. But about fumarates they know nothing and go for rumours. While there are thousands of patients that do very well on it...... It is everywhere the same in the whole of Europe and the States even worse. We have a saying: "If a farmer doesn't know it, then he will not eat it." in other words, a giant lack of knowledge.
Wed-06-05-2020, 17:18 PM
(Wed-06-05-2020, 16:22 PM)Caroline Wrote:(Wed-06-05-2020, 16:07 PM)D Foster Wrote: It's a very strange medication, when I mentioned it to my dermatologist a few years ago I got the impression that he wasn't too keen on it. I'm not sure I'd agree with the "no knowledge" part. I know that it works VERY well for members here!! In the US it's used to treat multiple sclerosis at a higher dosage I believe and the main concern seems to be liver damage. I know there are a LOT of meds that have to be monitored so I don't know if that is something that has held it back in some places or not. Also some people can't seem to handle the side effects (as I've seen a few post here throughout my time that they had some problems there) so that could be an issue as well. Just guessing here as to possible reasons why it didn't catch on quite so much everywhere since it does seem to be a good treatment! Sorry Jim, don't want to take your thread off topic but I admit I've been very curious about DMF with you and Caroline being such huge fans and having success with it so I do wonder why it's not prescribed more often or offered in the US as a treatment for psoriasis. It could well be lack of knowledge or it could just be that the money is in biologics. Either way I'm glad your dosage increase has helped!! |
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