kiwimum03

Coming Off Plaquenil (questions)

23 posts in this topic

Hi Irene,

 

I've been wondering the same thing as Heidi! How are you getting on?

 

Warm hugs,

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I haven't had the rash, but I have severe itching with my arms. I too have tried almost every lotion/moisterizer on market. One was recommended to me if you would like the name send me a private message - it has helped tremendously. I needed more but the stores nearest to me didn't have it. I tried the medicated (extra strength) body lotion has been a decent substitute, but I think I like the other better. Maybe one of these will help.


I may have Scleroderma, but Scleroderma doesn't have me!

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Hi everyone, thank you for your concern.

 

well, the rash still comes and goes. It has been about 9 days off the Plaquenil, and my itch has finally gone.

 

I am EXTREMELY sun-sensitive, even in the shade, if that is possible, i am wearing sunscreen, but that doesn't seem to help much, so I just stay inside.

 

Most days my rash just looks like a mottled faded tan, but others even if I have had a glimpse of sun, it looks burnt and red.

 

I rang my rheumatologist's office today to let them know how I was getting on and also to explain that my joint pain is horrendous, I am waiting for them to call me back to see if I can have my March appointment brought forward so we can discuss medication options.

 

I also told them about my GI issues and SOB, which has worsened dramatically this last week. I have been vomitting again at night as food keeps coming up.

And on Wednesday night, I vomitted bile and a little blood which freaked me out, so I went and saw and general practitioner the next day as mine was busy.

BUT, i was so pleased, he agreed that I should have a scope down my throat to see what is going on, so he sent a referral off to the hospital.

 

Of course I will probably be on the list for a few months, but at least I am on the list!

If I can save up and have it done privately early I will see. But at least I feel I am getting somewhere, as my own general practitioner just keeps thinking my acid will just go away.

Hmmmm after months of problems I don't think so!!!!

 

So that is my update for now, at least I am not itchy anymore!!!!

 

Hugs,

Irene

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Oh Irene,

 

I'm sorry you are battling with all of this. I do hope that your wait for the scope isn't long. I wish the doctor that you saw just recently that made the referral for you would have been able to help you with meds for your joint pain. I'm not sure I understand how your medical system works over there, but don't let them forget you!!


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Irene,

 

I'm so glad for you that your itch has gone! At least you're not following me in that as I first thought! But I do know how maddening an itch can be! So maybe it was the Plaquenil? I wonder what the rheumatologist will make of it.

 

One little thing to remember if you are vomiting often and/or forcefully it is possible to rupture a small blood vessel in your throat or esophagus, which could be the reason for the blood. Was it bright red? I ask this as some of the times I have had peritonitis with all the lovely accompaniments of vomiting etc, I was vomiting almost black stuff which was blood from the stomach or even further down. Yuk!!

 

However, it is definitely best to ask the doctor about this sort of thing. I'm glad you are having a scope, and hope it's not too long! I have had two of these sort of scopes in the public hospital. It was actually when I was an in patient, so I didn't have to wait, except all day, without anything to eat either! :o

 

When I had a colonoscopy I went private, (insisted actually), and was treated very well, with a great surgeon who had done over 2000 of these! He also does the gastroscopies, so IF you want to go private for this I would highly recommend him, and can give you his name if you want it.

 

I hope you can get an earlier appointment with the rheumatologist, and please let us know how you get on! Good luck!

 

Warm hugs,

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Hi Sweet and Sherrill,

 

Sweet, when I saw the general practitioner who made the referral, he just said that if I needed to take ibuprofen then just take it, even though it may irrate my stomach, I really don't think he knew anything about connective tissue diseases and so didn't want to go there basically.

I have been trying to NOT take any NSAIDs, and it has been helping my stomach issues, unfortunately, it doesn't help my joints and they have been very sore and my elbow is swollen. grrr.

My rheumatologist's office phoned and the earliest I can get in is in 4 weeks time, but she did put me on a cancellation list.

 

Sherrill, I have sent you a PM, any information would be great, thank you!!!!!

 

My blood was bright red, so I am assuming I tore something with all my vomitting that night.

 

I will let you know how I get on,

 

Big hugs,

Irene

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