M is for Metallic Taste in Mouth
As I have mentioned in previous posts, the symptoms of topical steroid withdrawal vary from person to person. I don't think that anyone would be unlucky enough to get all of the symptoms, but by doing this A-Z, I can at least cover some of the more common side effects experienced by people stopping steroid creams.
I have to admit, that I haven't personally experienced the symptom that I am discussing today, but judging from the comments on the ITSAN forum, many people have, so that is why it deserves a mention.
A lot of people in TSW talk about a strange metallic taste in the mouth. I don't really understand what could be causing this, but there are too many people reporting the same symptom for it to be a coincidence. My only theory is that possibly it could be related to the oozing that we experience, when the serum fluid leaks from the skin, or possibly something to do with the immune system. As I say, these are just guesses, as I am not a doctor.
According to some medical websites, a metallic taste in the mouth is not usually a serious symptom, but it can indicate an underlying health issue or can be a side effect of certain medication. It can also occur in allergic reactions, which may suggest a link with TSW and hypersensitivity.
Here are some of the comments that people have made about this strange symptom:
"I think any mucous membranes can be affected - I've had issues with
eyes, sinuses, ears and gut! And my mouth has had metallic taste, loss
of taste and strange big blisters on the soft palate since starting
withdrawal."
" I walk around the house crying all of the time. Have dropped 8 lbs now. No appetite. Have metalic taste in mouth. Not sleeping."
"Come to think of it, while I was still using topical steroids, I complained of a metal taste in my mouth and thought it was a filling from my tooth, but it is gone now."
It seems that the metallic taste in the mouth is quite normal during steroid withdrawal and may be annoying, but is not too troublesome compared to some of the other symptoms that we can experience.
7 comments:
Thanks for your comments about the VGRD blog case of TS addiction. The patient, while not perfect, is doing very well and uses tacrolimus 0.03% ointment two times a week. You are addressing an important topic and should write up your experiences with this as a paper. There is a journal about patient-centered care that would publish it. If you are interested write to me: djelpern@gmail.com
Hi Louise,
After 2 weeks of hell and needing o be semi-human again for a whole host of reasons, I have decided to throw in the towel for the moment. A course of antibiotics from the doc and some low-med strength TS, and I am back on the wagon so to speak. Sad, I know, but next time I am going to be more prepared! Too much on my plate at the moment.
Anyway, wanted to write and thank you for your feedback and support during my two weeks of hell. I wish you all the very best in your recovery, and looking forward to seeing you 100% healed very soon!
Take care
Trish
Hi Trish,
Thanks for your honest comments.
The reason for writing this blog was to show the true reality of steroid withdrawal and how difficult it can be. I think you have seen that first hand.
I totally understand your reasons for resuming steroid creams. Withdrawal literally takes months out of your life and very few of us have the circumstances to be able to put everything on hold for months whilst we get our skin in order and it is even harder for those juggling full time work or school.
Please keep in touch via the forums and cheer us on. Hopefully there will be a time in the future when your circumstances will make withdrawal easier. In the meantime, just use the minimal amount of steroid needed to control your symptoms and take breaks in between to minimise addiction symptoms.
I wish you al the best and hope you get some relief for your skin soon. x
Hello there, I am so excited I found your site, I really found you by error, while I was researching on google for something else, Anyhow I am here now and would just like to say kudos for a fantastic post and a all round thrilling blog (I also love the theme/design), I don’t have time to go through it all at the moment but I have saved it and also included your RSS feeds#comments
Hi Louise,
It's been a couple of months since I last checked in--I am so happy to hear about your incredible progress! Such great news.
I wanted to follow up on some success I have had with a dermatologist in Canada. I know you have taken the steroid free path and I commend you for that, but as previously mentioned I had so much on the go that the withdrawal became too much to handle for me personally.
Anyway, in two short months I have been all but weaned off my topical steroids. My derm explained it as thus: he said that people like me have a compromised skin barrier, deficient in a protein called fillagrin (sp?). Anyway, makes for an easy way in for all sorts of irritants (I am sure you know this already).
So he compounds a cream for me containing the following:
urea
glycerin
1% hydrocortisone
in a glaxal base (in Canada Glaxal is a base cream with about 4 ingredients, essentially an emollient).
When I looked at the script I think I laughed out loud--I had been using potent steroids on most of my body for months, how did he expect a hydrocortisone to be effective?
He assured me that it is less about knocking the inflammation and more about repairing the barrier. With improved barrier I would eventually not need steroids and have less secondary infection.
The challenge was getting there. That meant applying 2x day, morning and night. The itch did not go away right away and I had to fight it pretty hard the first few weeks. But you know what? It bloody well worked! I am sitting here writing to you with almost normal skin. I am down to the once a day application, with a steroid-free oil-in-emulsion cream as my alternate (great stuff by a brand called Excipial out of Switzerland). I even have a tan?? Crazy!
I guess my point is that I feel like I was able to get to a manageable point with this disease without having to continue the withdrawal hell. I know others have not had the same success, and finding a good derm can be difficult, but I am pretty convinced this cream really made the difference. Over the counter creams are usually full of all sorts of crap and all it takes is one irritant to set you off. Plus it was a way better option for me as the two weeks of withdrawal were so insane and I was so unhappy...seems like weaning was the way to go, as is the case with many addictive drugs.
Anyway sorry for the long story, I just thought it might be worth sharing because the ITSAN forum gives quite a strict perspective of all or nothing and I am just not sure that is right for everyone.
They have also locked out their google group which I think is a bit odd for a group that wants to share info?
Thanks again Louise, and so happy for your success!
Trish
Hi Trish,
Thanks for your comment and sharing your experiences.
It just goes to prove that there are many ways to get off the steroid creams and that cold turkey doesn't work for everyone. Hopefully this may help people decide what choices to make and that there is more than one way to get healed skin.
I'm so glad that you are doing well. Your story is inspiring and I'm glad your skin is returning to normal. Well done for quitting the steroids. keep in touch and let me know how you are doing. x
My husband was started on mg predisone 8 mo ago for PMR. He has tapered down to 12.5 mg but developed a terrible, disgusting taste in his mouth - tasted coppery and as it went on tasted like blood. Resulted in loss of appetite, inability to eat any meat, etc. His doctor put him on medication for thrush - lozenges. After ONE dose, he is MUCH better - It's a miracle. We are filled with JOY!
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