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Coming Off Plaquenil (questions)


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#1 kiwimum03

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Posted 28 January 2007 - 02:25 PM

As some of you know I started on Plaquenil 6 weeks ago. After two weeks I stopped it because of liver pain, and we found out I had raised liver enzymes.
I stayed off it for two weeks until I could contact my rheumatologist (who was on holiday)

My rheumatologist did not think think the Plaquenil would cause liver problems so he told me to go back on it.

I have been back on it for almost 2 weeks. the day I started back on it, I developed a rash on my hands and forearms, which is itchy on and off. (my general practitioner has seen this, but wasn't too worried)
Over the last two weeks the itch has gotten worse and the rash has spread to my upper arms as well, it is not a bright rash, it just looks like I have had some sun and is mottled. and some times it just looks a bit like dirty sunburn (if that makes sense)

I am not able to see my doctor until Tuesday, but since the itch got worse on Saturday night (at 2am!!) I decided to stop taking it. So this is now the second day of not taking the Plaquenil.
I still have the rash and the itch, and this morning my lower lip was swollen and red on the inside.

my question is, is this rash and itch perhaps NOT from Plaquenil?? It seems like in patches in my arms and face that the pigment is getting darker around my lips and eyes, and also on the insides of my arms (which are usually white).

Anythoughts from anyone would be appreciated.
sorry to rehash everything, but I am so lost.

Big hugs,
Irene

#2 Sweet

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Posted 28 January 2007 - 03:16 PM

Hi Irene,

You poor thing! The rash you are describing certainly sounds like an allergic reaction. If you didn't have this type of reaction the first time around with plaquenil I'm guessing it isn't the culprit this time and may just be coincidental. Do you start anything new at the same time? New soap, deodorant, shampoo, lotion?

The other thing you could do is give a call to the ER since you are unable to reach your provider until Tuesday.

Can you take an antihistamine for the itch until then?
Warm and gentle hugs,

Pamela
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#3 Guest_Sherrill_*

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Posted 28 January 2007 - 04:19 PM

Hi Irene,

I've been observing your posts about your "rash", but didn't want to comment until now.

You see, unfortunately what you are experiencing sounds VERY like what I had in the early days of my illness. I couldn't understand the "rash" and itching either, but the rash didn't really look like a rash. It looked very like the description you have just given.

It started on my hands, and moved up from there. It also went to other places too at times. But the itch was awful, and nothing I seemed to do helped. The doctors didn't have any idea either, and would sometimes get me to try steroid creams, which in my experience made it feel worse!

Note also........ I wasn't taking Plaquenil, or anything else which could have remotely caused it. Eventually I just stuck with using HEAPS of moisturizer, like 3 times per day. It didn't stop the itch, but it tamed it a little. (If you want the name of what I used and still use every day, I'll send you a PM. It took a long time to find the best one, but I must have used gallons of it by now!)

I didn't find antihistamines to help either, but they may with you, so it probably wouldn't hurt to try, though I think you should also check this out with your general practitioner.

I would be hesitant to stop the Plaquenil, as from what I read, it doesn't seem to have side effects like this. Also doctors get somewhat irate if you keep starting and stopping meds, without consulting them about it. :(

You're going to want to know what causes it! Well, I'm not a doctor, but I know that itching is very common in scleroderma, and many here post about it. I *believe* that it is something to do with the deposition of the extra collagen under the skin, but don't ask me any more than that! :unsure:

Although it's a while ago now, and memory about unpleasant stuff tends to be usually short, I remember my lips being affected, and becoming numb and prickly. They may have been swollen too, though I can't definitely remember that.

Pigment changes of the skin are also common in scleroderma. Some people have their skin go darker in patches, and some have light patches. I have a few of both, though not too much, thank goodness!

I'm sorry I'm not more cheerful about this, but it's best to know rather than be always wondering. See your general practitioner when you can, and contact the rheumatologist, also when you can. (They're hard to get sometimes!!) But unfortunately they're not miracle workers. However, stick with the Plaquenil if you can, as it is slow working, and you may yet have good results.

Most of all........ though it's VERY hard to do....... try not to stress, as it is counterproductive, and causes scleroderma, or any autoimmune disease, to flare!

Let us know how you get on please.

Warm hugs,

#4 kiwimum03

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Posted 28 January 2007 - 05:36 PM

Hi Pam and Sherrill,

thank you so much for your messages, gee it feels like I post a new message every second day about something lately!!!!

Pam, I have tried to think of anything "new" that I have taken or used, and I can't think of anything at all.
I have also noticed that I cannot rub my skin at all after my shower (not even a little) or else my itch is intolerable. I have to gently dab and then load on the moisturiser.

Sherrill, thank you so much for your post, it was very enlightening for me, and I have taken my Plaquenil this afternoon (after I thought about it), so even though I didn't take it yesturday, I have only missed one dose. I think you are right, I should talk to the doctors before I stop it.........I was just hoping it might stop my itch!!!! But it hasn't.

I will send you a PM for that moisturiser.

My lip is still swollen this afternoon and I have taken a photo of it to show the doctor when I can, so I hope they can figure it out.

Big hugs,
Irene

#5 WestCoast1

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Posted 28 January 2007 - 07:00 PM

Irene,
I read your post and it sounds like something I have been through before. I have been on Plaquenil for a long time now and just last summer I found out how sensitive it makes your skin in the sun. I got a horrible rash on my arms and face after just 30 min. in the sun.

Anyhow, my doctor told me that this medication causes sun sensitivity, and that was the cause for my rash.

Not sure if this will help, but it is definately good to know when taking this med.

Hope you are feeling better soon,
*WestCoast*

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#6 kiwimum03

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Posted 29 January 2007 - 12:54 AM

Hi Erin,

thanks for your post. How long did your rash last for once you got it?
Mine as been going for two weeks now, which makes me wonder what it is.

Also tonight I noticed I now have the rash on my knees and down my right calf and on my back, I am starting to freak a bit. But I am going to the doctor in the morning.

My arms are still rashy, but now it looks like I am getting a nice tan, even on the inside of my arms, but the funny thing is that I have made a point NOT to go outside, so I am very confused.

I will let you know how I get on.

Hugs,
Irene

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Posted 29 January 2007 - 10:42 AM

Hi Irene,

I'm glad you're seeing the doctor, but I think it would also be a good idea to contact the rheumatologist. The problem with general practitioner's they are not experienced in scleroderma, or like diseases, and may not be able to give you any answers.

I'm afraid you still sound as though you are following a similar pattern to that which I experienced in my early days with scleroderma. However, I'm not a doctor, and may be quite wrong! I hope that is the case!

But would you agree that the "rash" is not really a rash? :huh: I found mine was dreadfully itchy, but there was hardly anything to see, and certainly nothing much to show the doctors.

Good luck and do keep us informed.

Warm hugs,

#8 kiwimum03

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Posted 29 January 2007 - 11:22 AM

Hi Sherrill,

I totally agree with you on all counts. I did try and ring the rheumatologist after I saw my general practitioner and either they are still on holiday, or busy, I do hope they will phone me back soon.

I saw my general practitioner an hour ago, told her all my current issues that have gotten worse in the last 2 weeks:
Nausea on waking, low appetite,
Rash and hyperpigmentation on arms,
Bad acid, reflux etc...

She puts all of this down to the Plaquenil. I don't agree with her. of couse some of these symptoms do come with Plaquenil, but the nausea and bad reflux I have had for a very long time BEFORE the Plaquenil.

She has given me an oral tablet to take for the itch, steroid cream for the rash, and she was going to give me something to empty my stomach out quicker (but we both forgot before my session was finished).
She also gave me some cream to put in my eyes at night as the artificial tears I use during the day just don't really help much.
She even did a pregnancy test in case that was the cause of my nausea! That made me laugh, as I have had my tubes tied, but I guess stranger things have happened.

I am not convicned the rash is from the Plaquenil as she did say that it shouldn't cause hyperpigmentation, which it has slightly. And sometimes I can't see the rash very well, which is like what you said Sherrill.

Also last night my skin was so sore, I got that 'sunburnt feeling" back again over my shoulders and back, and the skin on my arms and hands, especially my knuckles just hurts when I move.

She wants me to stop the plaquenil, but I will keep taking it until I can talk to the rheumatologist and describe all of this to him.

One good thing that came out of it was that she thinks that I should perhaps go and see a Gastro specialist (which I KNOW I need to go and see), I don't know why doctors always take so much convincing?
Any more symptoms she will refer me, and trust me I can give her alot of symptoms. I guess I tend to pick the most severe ones when I go and see her because she gets flustered with too much, but now I am just going to lay every problem down, and she can refer me.

okay thats my updated novel for now.

Hugs,
Irene

#9 Guest_Sherrill_*

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Posted 29 January 2007 - 02:33 PM

Hi Irene,

I hate to say it, but your general practitioner is acting somewhat out of her depth with your problems. The fact that she gets flustered is not a good sign. She really shouldn't be telling you to stop the Plaquenil without discussing it with the rheumatologist who put you on it in the first place.

It doesn't surprise me though, as I had similar experiences with general practitioner's when I was trying to be diagnosed. I went through 4 general practitioner's before I settled on the fourth. I also went through 3 rheumys before I settled on the third one, who you are also seeing now. So many times I'd tell a general practitioner a certain symptom, and they'd look at me sort of blankly, or you could see them thinking I was making it up. One had me see a psychologist! That did me a lot of good, I don't think, and didn't help at all with the diagnosis!! :blink:

You're still describing most of my early symptoms, though I was fortunate, and still am, that acid reflux has not been one of my severe symptoms. However, most of the members on this Forum seem to suffer with it to a greater or lesser degree.

Nausea too is very common. I have learned to mainly control mine with an OTC travel sickness pill. I don't need much either. Actually, in the early days, when I had a great deal of uncontrollable pain, the doctor put me on a narcotic, which made me nauseated. The local hospice was helping me through all this, and suggested I take this travel sickness pill at the time. They were actually very helpful in many things.

I will be interested to hear if you find the steroid cream helpful for the itch, as I was prescribed that, but found it made things worse! Hopefully you don't!

I'm glad though that she gave you something for your eyes at night. I've used an ointment in my eyes at night for years, as otherwise my eyelids seem to stick to my eyes. As regards to the drops........ they're fine for the day, but not for the night. Also, you may need to experiment with several sorts, as some are better than others, and some may suit you better than others. Have you tried the one yet I recommended? I found it the best of any.

I know that "sunburnt" feeling well, which went along with the itch! Trying to describe it to a doctor though was almost hopeless!

Regarding the gastro referral..... personally I feel it would be best to have the rheumatologist refer you, as he is the most knowledgeable about the symptoms which do or don't make up scleroderma etc. He was the one who referred me to a kidney specialist when my kidneys failed. This after he had sent me for many tests. I have found that often specialists are more attentive to referrals from another specialist than just a general practitioner.

Well, I've written a novel this time! :o I do hope you can contact the rheumatologist, and maybe even get to see him! Keep trying!

Warm hugs,

#10 Guest_Sherrill_*

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Posted 29 January 2007 - 03:07 PM

Hi again Irene,

Maybe it would be a good idea for you to review the Scleroderma Symptoms page on the main website?

If you are familiar with this you might feel more comfortable talking to the doctors. I know I have found that "knowledge is power"!

Warm hugs,

#11 kiwimum03

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Posted 29 January 2007 - 03:18 PM

Hi Sherrill,

thanks again for your replies, you always seem to motivate me into the right area.
I have been wanting to change general practitioner's for a while, I guess I just have to do it.

The rheumatologist's office phoned and said if the rash is itchy stop the Plaquenil for a week and then review, so I will do that.

I am defintately going to talk to him about a referral to the Gastro doctor, but I wonder if he will make me go private or if I can go through the hospital system with a referral from him?

I haven't used the type of A. Tears you suggested yet, but I think I am going to try them, as my current ones don't seem to work very well. Everything is just a matter of money with me, unfortunately.

Thank you so much for your guidance I am going to go back and read the symptoms page again.

Hugs,
Irene

#12 Guest_Sherrill_*

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Posted 29 January 2007 - 04:13 PM

Hi Irene,

I'm so glad the rheumatologist's office contacted you! As he has said to try going off the Plaquenil, that's good. But I wasn't happy with the general practitioner telling you that, for reasons already said.

I hope you can find a good general practitioner this time, who will work with you and the rheumatologist! Good luck on that.

One of the general practitioner's I saw had done post graduate work in rheumatology. But the first rheumatologist she sent me to wouldn't even send a report to her. I asked to see an immunologist, who was the first to actually say possibly scleroderma. When I told the general practitioner that she said "what rubbish, you haven't got scleroderma!" Hmph, little she knew!!

The next one I went to was not too bad, and managed to get a report from the rheumatologist after 6 months! But when I started having lots of pain he wouldn't give me much for it, just OTC stuff which didn't help. So the last one was the one who really helped me with the pain and other stuff too.

I think if you say to the rheumatologist you want to go through the hospital system, he will oblige. He may ask why, but just be frank with him, he won't mind. Luckily I have had medical insurance since I was 18, so can see private specialists whenever I want to, including going to private hospitals too. Many of my medications are also paid for. Of course, my kidney failure stuff all has to go through the public health system, as that's how it works. But in this I get pretty good service, and I believe all the dialysis equipment etc. costs upwards of $50,000 per year, so I'm not complaining! :rolleyes:

Well this was going to be a short reply! :lol: So I hope you can get some relief from the itching in the meantime.

Warm hugs,

#13 jefa

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Posted 30 January 2007 - 09:36 PM

It does seem at times that there are ego problems between the general practitioner and the rheumatologist. When I first started seeing my current general practitioner, I was upset with him for a number of reasons, but after sticking with him for a little while I learned that he had my best interests at heart. He was very cautious about the Plaquenil my first rheumatologist wanted me to take, given that I had some unresolved eye issues (monocular diplopia). The first rheumatologist had a rather cavalier attitude about the risks involved. The general practitioner insisted I have a baseline eyetest before he would prescribe it and when I started having some strange visual manifestations, insisted that I stop taking it. It wasn't doing anything at all to stop the symptoms of inflammatory arthritis. Scleroderma didn't come into the discussions until I started seeing the second rheumatologist (who seems much better than the first). Now, however, the general practitioner seems to be treating his opinions with much more respect than the first one. At my last appointment, he was spouting new data that he had obviously just studied up on since my last appointment. Nice when they can work together with you.

#14 kiwimum03

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Posted 31 January 2007 - 07:20 PM

Jefa,
I am so happy that you have found a good general practitioner and rheumatologist!

My rheumatologist and general practitioner don't talk to each other, but my rheumatologist does send my general practitioner notes from every consult I have with him, which is good for my general practitioner to read, because I fear my general practitioner thinks I am a bit of a hypochondriac.

I have had a good recommendation about another general practitioner who has an interest in Rheumatology, so that is a good start I think.

Nice to know that it is possible to find doctors who work well with each other!!!

irene

#15 Heidi

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Posted 07 February 2007 - 02:22 AM

Hi Irene,

I was just wondering how you are doing. Has your rash gone away now that you have stopped the Plaquenil?

Warm wishes,
Heidi

#16 Guest_Sherrill_*

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Posted 07 February 2007 - 10:26 AM

Hi Irene,

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

Warm hugs,

#17 nan

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Posted 07 February 2007 - 01:11 PM

Irene,
How are you doing? Has the doctor figured anything out yet?
Nan

#18 smac0719

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Posted 07 February 2007 - 03:08 PM

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!

#19 kiwimum03

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Posted 08 February 2007 - 01:27 PM

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

#20 Sweet

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Posted 08 February 2007 - 01:56 PM

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)