Author Topic: 28 months in and thinking of giving up  (Read 222 times)

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Offline mirkahirka

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28 months in and thinking of giving up
« on: August 13, 2017, 06:53:37 AM »
Firstly apologies that this is a negative post in a way...probably not helpful for anyone who is looking for encouragement.

I am 28 months in now and worse that I have ever been. Last four months have been a total hell and I ended up most time back at my parents with my four month old baby as really needed my parents help.
I thought I was strong but last few weeks I have fell into a really dark place unable to look after my baby or myself. Unable to sleep, costant ooze at night and scratch and rashes spreading to full body.

I said to myself in the past I would never give in but I cant go on like this as life around me doesn't stop and I have responsibilities for others.

I have been off Elocon for 28 months now after 18 years of sporadic use. I have never taken anything else so now started looking into oral immunosupresants or oral steroids. or even considering starting much less potent topical cream. I need to get better fast and able to function.

My theory is to take something now and maybe readdress the whole thing in the future when there is some treatment available. or just suffer it out again when the timing is better. But at the same time I feel so disappointed in myself as giving up after such a long time. Gosh, I am so confused by the whole thing and feel like having million different things going on in my head. My whole family were supportive of this at first but now seeing me like this start pressuring me to do something to get better now. All in good faith.

I have made an appointment with a dermatologist next week and will see what they suggest.

I guess If am just having a rant, feeling so confused about what I should do and maybe hoping to hear that its ok to do tackle this on more than the firs attempt and not feel like a failure.

 :sad:
Used Elocon since birth sparingly but for over 20 years. Started TSW in April 2015

Offline AYID

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Re: 28 months in and thinking of giving up
« Reply #1 on: August 13, 2017, 12:33:05 PM »
Can you please talk to Dr. Rapaport? When you get hopeless there are other options, like cyclosporin and gabapentin to help you pull through.

Offline animorphs

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Re: 28 months in and thinking of giving up
« Reply #2 on: August 13, 2017, 01:49:00 PM »
This state of confusion for fellow longterm sufferers drives me crazy too. I hope your dermatologist understands your concerns and works with you so that you can get past this.

Offline AYID

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Re: 28 months in and thinking of giving up
« Reply #3 on: August 13, 2017, 02:13:57 PM »
Mirkha, don't forget that you are also only 4 months after having a baby. You are probably exhausted, so everything seems so much worse. Get help from various sources, like the right doctors, help with baby, etc. Don't make a decision you'll probably regret because you're in a dark hole now.

Offline mirkahirka

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Re: 28 months in and thinking of giving up
« Reply #4 on: August 13, 2017, 02:14:22 PM »
thank you both.
I have been in such a dark place the last couple of weeks and just dont know what to do or how to go on.

I would love to talk to Dr Rap. I actually tried looking up how I could get in touch with him a few weeks ago. I am in the UK, does he do any virtual consultations or anything similar? Any info on how to contact him would be very much appreciated.
Used Elocon since birth sparingly but for over 20 years. Started TSW in April 2015

Offline mirkahirka

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Re: 28 months in and thinking of giving up
« Reply #5 on: August 13, 2017, 02:21:35 PM »
AYID thank you for your suggestions. You are right since having baby it was a real battle. Less sleep and more stress. I now have tons of help with the baby so really need to pull myself together. I think I will try the cyclosporin /or something similar/ route before touching anything else.
Used Elocon since birth sparingly but for over 20 years. Started TSW in April 2015

Offline AYID

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Re: 28 months in and thinking of giving up
« Reply #6 on: August 13, 2017, 05:04:30 PM »
Yes, he does telemedicine for those who cannot travel. I reached a point where I was ready for stronger meds, but then became pregnant. I think I will do gabapentin and/or cyclo if it ever gets too hard and is safe.

Dr Rap's info:
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Dr. Marvin Rapaport, MD

436 North Bedford Drive Suite 306
Beverly Hills, CA 90210

Phone: (310) 274-4401
Fax: (310) 274-5194
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Offline mtem

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Re: 28 months in and thinking of giving up
« Reply #7 on: August 15, 2017, 10:09:55 PM »
My heart aches for you. You have already suffered so much and come so far. Let it not be in vain. Please don't give up. I'm so glad you are letting your parents help you. Don't feel badly about that. Accept all the help you can get. Your baby needs you to get your health back. It's so so hard right now, but it's going to get better.
In TSW since August 7, 2015. (Hand eczema due to nickel and soap allergy.) Used mild steroids periodically from 2006-2010, then was prescribed stronger ones from April 2012-July 2015 which only produced more rash. Prednisone in 2014. Cortisone injections as a teen.

Offline Shehz

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Re: 28 months in and thinking of giving up
« Reply #8 on: August 18, 2017, 10:15:20 AM »
You could also think about dupilumab instead of steroids. It's available through EAMS in the UK, the dermatologist refused it for me as my skin suddenly started to improve but you could give it a go.
Stopped steroids: 08/2013 after eight years usage.

Offline AYID

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Re: 28 months in and thinking of giving up
« Reply #9 on: August 18, 2017, 11:09:17 AM »
The makers of dupilumab have absolutely no idea of what the long term ramifications of this medicine are. It may prove to be just as bad as steroids.

Offline Georgie.C

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Re: 28 months in and thinking of giving up
« Reply #10 on: August 18, 2017, 01:10:08 PM »
Hello mirkahirka

How old is your baby now? As they do get easier as they get older. I really do feel for you as my skin was perfect (no TSW just mild eczema) when I had my first child. But I was all over the place. So I can only imagine how hard this is for you going through TSW at the same time. No one can prepare you for how a baby turns your life upside down. I was a pro by the time the little one was 6 months though :) More sleep etc etc. So things will get easier. If you decicde to persevere with TSW.

I did have a baby while going through TSW but I was very lucky that I wasn't in flare while the baby was young.

You need to do whatever you feel suits. I am very distrustful of all medicine at the moment so personally would just try and struggle through with TSW and wait for the flare to end. But that is just me. We all have to make the right decisions based on our own personal needs. I hope you find the right path for you soon.