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I feel like I'm losing my mind. My arms, legs, face don't itch at all. My scalp, which used to be the worst, barely itches. My back itches a lot and my stomach - holy hockeysticks - It's driving me crazy. I am taking antihistamines to try and quiet the itch down but they don't seem to do much. I don't understand why some body parts that have plaques don't itch and others itch like crazy. No lotion or cream seems to keep my skin moist and every one of them burns when applied to my stomach.
This affliction is new to me so I'm still trying to understand the ins and outs. Bear with me!! I honestly don't even know for sure if I was correctly diagnosed. My dermatologist looked only at my elbow, not any other body part, didn't take a biopsy, didn't ask me any questions at all. I was in and out of his office in 5 mins after saying I think I might have psoriasis (after waiting months for an appointment). He threw 3 prescription creams at me and a few weeks later when I insisted he see me again because my scalp was on fire and the lesions on my body had tripled in size and in number, he threw a few more different steroid prescriptions at me and referred me to another dermatologist that I'm waiting months to get to see.
I don't know how people deal with this affliction without jumping out the window. I'm about ready to. Even if I wanted to go back to using the steroid topicals I would have to practically cover my entire torso and upper arms. Doesn't seem like a real good idea to have my body absorbing that much steroid.
What do you folks think????
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Fri-18-07-2014, 20:28 PM
(This post was last modified: Fri-18-07-2014, 20:34 PM by jiml.)
I think Kelly you should go back and get a proper diagnosis ( it looks like psoriasis to me but I'm not a doctor.).if the creams aren't working and you have bad itching where you don't have plaques , it could be a reaction to another of the supplements you are taking or your bodies reaction to your cold turkey treatment
I say get to see a sensible dermatologist and explain to him the despair you feel and ask if it's time to take the next step which is usually methotrexate. It's not a drug I like or rather it didn't like me. But some people swear by it .
If it's going to work you should get reasonably fast results, or you could go down the route that Fred has taken stelara
You can't get my treatment in America or I would recommend that.
These are just ideas but I think you should be properly seen and advised professionally
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- Get a definite diagnoses as it could be something else and you could make it worse.
- Go for the topicals to start with and get sorted, you can always try natural later.
- Go for a modern treatment after a proper diagnoses, it will give you your life back.
- Dump the natural approach for now and get sorted with prescribed first.
- Don't jump out the window it's messy for those that have to clean up.
- Bag of Frozen Peas or Ice = instant itch relief.
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Treatment: Got back to DMF slow release
You basically are paying the doctor, right?
Then he ought to diagnose you well, so make a complaint at the insurance.
Perhaps try to find a different doctor who is better.
Follow Fred's advice. If it is really psoriasis.
Try to avoid methotrexate. Pure poison.
Go for Fumaderm, Jim's treatment, it should be available in the us or importable without problems, unlike Jim says.
Advantage of Fumaderm, or... Better said, dimethylfumarates is that it is quite harmless, even if you don't have psoriasis, it does not harm you.
If it is psoriasis then you have a 70% chance that it works.
You can later on add the diet to it, and go slower than the cold turkey method.
My two cents.
Caroline
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Yes I'm with Caroline don't go Methotrexate.
I'm not sure if you can get Fumaderm in the USA but the Bio's are available. Yes you are worried about them but the Bio's and Fumaderm will sort you out.
Mataribot knows more about what is available in the USA so he may spot this and have some ideas, if not give him a shout.
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jiml - it does look like psoriasis to me as well, but I'm no doctor. I itch only where I have plaques but all of my plaques don't itch is my issue. My legs for instance - never itch.
As for the methotrexate - my dermatologist didn't want to put me on it because I've had radiation and chemo for breast cancer and apparently methotrexate lowers your resistance to fight some types of cancer which would not be good in my case. I'm starting to think I need to give my oncologist and radiation Dr's a call to get their opinion on this.
Regarding the steroids - i have a read too many negative things about putting these on my face. My body I don't mind so much.
I'm not giving up on the diet just yet folks. I've committed to 12 weeks and if after that no luck then I can still go down the methotrexate or other treatment route.
:-)
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(Fri-18-07-2014, 21:03 PM)kh924 Wrote: jiml - it does look like psoriasis to me as well, but I'm no doctor. I itch only where I have plaques but all of my plaques don't itch is my issue. My legs for instance - never itch.
As for the methotrexate - my dermatologist didn't want to put me on it because I've had radiation and chemo for breast cancer and apparently methotrexate lowers your resistance to fight some types of cancer which would not be good in my case. I'm starting to think I need to give my oncologist and radiation Dr's a call to get their opinion on this.
Regarding the steroids - i have a read too many negative things about putting these on my face. My body I don't mind so much.
I'm not giving up on the diet just yet folks. I've committed to 12 weeks and if after that no luck then I can still go down the methotrexate or other treatment route.
:-)
I have read somewhere and I can't lay my hands on it at the moment that people are getting my drug in America .
Kelly I have just had radiotherapy on my prostate cancer and my oncologist could see no reason to stop my Fumaderm unless my lymphocytes dropped to unsafe levels. And they stayed constant throughout my treatment. My levels have dropped a bit now but are still acceptable to the medics and I have reduced my dose and am still clear.
I agree that methotrexate is an awful drug but it tends to be the first line treatment as it's cheap. If this has been ruled out great push for my drug which as Caroline says is pretty harmless.
Finish your twelve weeks and but in the meantime get to see your specialist and discuss the future treatment in the unlikely event that diet doesn't work...
Have a read about my treatment here
[Post=19818]
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What would I do without the support from all you wonderful people. Thank you so much
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Yes you can get dimethyl fumarate preparations in the US, at least from what I have read. On the available evidence there is no indication that it increases the risk of cancer. It is good for the skin also. I wish it was more fun to take but it has been extremely effective for me, and knowing what I know now I would have started on the drug 15 years earlier.
Cheers,
Bill
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(Sat-19-07-2014, 06:13 AM)Bill Wrote: Yes you can get dimethyl fumarate preparations in the US, at least from what I have read. On the available evidence there is no indication that it increases the risk of cancer. It is good for the skin also. I wish it was more fun to take but it has been extremely effective for me, and knowing what I know now I would have started on the drug 15 years earlier.
Cheers,
Bill
Legally, I wouldn't do so. Not worth the risk - there is a drug (phase III) that uses DMF as the active ingredient. Back to the subject, she is going to have a hard time finding anyone willing to subscribe any systematic treatment due to her previous cancer problems. I'd recommend finding a dermatologist who is a psoriasis specialist.
Long term use steroid cream over large portions of body may cause problems. How much and when is a doctor question.