Anyone else feelng drained and ill using steroids?
Posted , 6 users are following.
I'm having an LS flare up at the moment so I decided to do the 6 weeks of clob application to try and keep it in check. I have been feeling very drained, tired and under the weather and thought it was because it's winter here in the UK and there are a lot of viruses going around at the moment. Then it dawned on me today that that it might be the steroid ointment that's making me feel so utterly awful because I can't think of what else it could be and I have been feeling like this for the last 2 weeks which is when I began the the steroid regime. does anybody else react to the clob this way?
Ive also been getting severe leg cramps over the past two weeks as well and this is one of the side effects of steroids. Im worried about it because we all know that the clob is the only thing that helps alleviate the symptoms of LS.
I would love to hear if anyone else reacts in this way and if you have come up with any solutions on how to help ease the side effects of the clob.
0 likes, 19 replies
nicole1990 deethebee
Posted
Hi there. I'm sorry to hear you have been feeling under the weather. I use clob once a week for maintenance because I tried using alternative things like ( borax for 1 year while I was living in South Korea) and it caused my skin to be in the worst shape of my life. How often are you applying clob during these 6 weeks. I think your symptoms could potentially be due to the clob application, How you tried using a not as potent steroid? That could possibly help symptoms? Maybe try to use less clob when you apply it? I hope your symptoms start to go away!
deethebee nicole1990
Posted
The borax made your skin worse, really!!? Im shocked and disappointed to hear that because i use a mix of borax in with my daily lubrication and its been working a treat on a daily basis with the clob being used once a week. However I noticed some new fusing of my labia and freaked out and thought I needed to up the steroids with a once daily application to see if it unfused me.....but i feel so ill with it i think I will go back to once a week. I will ask the doctor if there is a weaker % clob i could use instead. Good idea, thanks.
nicole1990 deethebee
Posted
I was using borax without clob. I was in South Korea for 1 year and thought my clob had expired after months of being there ( I was wrong) as it lasts quite some time. I also was not sure about using steroids because I was originally told to only use it if I had a flare up. That was my second mistake. The once a week maintenance of clob is needed (or a weaker steroid ointment). Best of luck to you! Let me know how you get on!!
Kathy291 deethebee
Posted
I have joined the forum just now, in order to reply to your comment.
I am pretty certain that Dermovate ( Clobetasol Propionate) affects my general health adversely.
Initially I used it in conjunction with Ovestin ( oestrogen) cream and blamed the Ovestin. I most certainly will never use Ovestin again.
But the Dermovate on its own made me feel ill also and I have never managed more than 2 weeks continous use for my LS because of this. In the last 2 years this has happened 3 times.
A GP -whilst telling me Dermovate is not significantly absorbed at this usage - did give me a weaker steroid ointment to try.(Eumovate).
However, another GP told me only the strongest ie Dermovate, will treat LS and I should not be using anything milder.
I seem to have a mild case of LS and with no itching. Nothing has made much difference in the last 2 years of ( probably inadequate) treatment. I am using Dermovate 1x a week at present as ' maintenance'.
2x a week was the instruction but I dont want to push my luck.
Guest deethebee
Posted
Hello Dee,
I have used the clob on an off for a month but never had the ill effects you describe. Putting it in the genital area, on the skin, does not absorb much into your system, at least that's what 5 gyn's have told me and I have read in the journals. From what you describe, I would say you have a virus. What is your white cell count? Have you been to the doc? Recently I began using organic soap and shampoo and not eating anything with an abundance of chemicals in it. Since I am better (no pain), I have to wonder whether removing some chemicals is the origin of my improvement. How much water and what kind of water do you drink? I would filter it. What about baking soda? Can you take a bath and soak with a cup of baking soda in the bath water?
deethebee Guest
Posted
Interesting information, thanks. one key factor that has helped has been upping my water and general fluid intake.
Guppy007 Guest
Posted
I agree that you might have something else going on, but even so I would stop with the clob every day and go back to once a week. Hope you start to feel better soon.
Guppy007
Posted
Sorry that was for dee x
deethebee Guppy007
Posted
Indeed i have, its another auto immune disease...hypothyroidism, only diagnosedthis year..I discovered this week that my thyroxin levels were high and thats why i was feeling so awful. I'm going to pay to see a private Dr. and will also ask if there are any links between the two diseases.
Guest deethebee
Posted
Dee,
There are certainly links between hypothyroid and LS. About 20-30% of people with LS also have thyroid antibodies. However, if your thyroxin was high, then you are not "hypo" but "hyper" thyroid. That means thyroid is putting out too much thyroxin not too little. So, if you get your antibody level checked and it is high, then you know you have autoimmune connections. The question is SO WHAT? What are we supposed to do about it? That's where I am: trying to figure out the connection and then how to fix what went wrong. Happy Holidays.
deethebee Guest
Posted
According to my medical records I am Hypo but I'm going to use my medical insurance and see a thyroid specialist in January. Hopefully I can have it all explained to me. I definitely think the two conditions are related but goodness knows how or why. I think my recent LS flare up was caused by my thyroid levels being high. Now I've upped my thyroxin my LS has improved!!
Guest deethebee
Posted
Hi Dee,
Your last 2 sentences have left me confused. You said your LS flared because the thyroid levels were high. Then you said "Now I've upped my thyroxin my LS has improved!!" If your levels were high, that usually means thyroxin, but if that made it flare, I'm unclear how taking more hormone improved the LS.
Yes, thyroid autoantibodies and LS are related for sure. There is also a condition called hypothyroidism Type II when the blood levels of circulating thyroxin are in the normal range but the thyroxin is not getting into your cells to do what needs to be done. Very few doctors know this.
Let us know please.
deethebee Guest
Posted
sorry, my mistake. I have an underactive thyroid. My TSH levels were high so they upped my thyroxin and as my energy slowly returned my LS symptoms improved. This led me to the realization that the two diseases might be linked.
Guest deethebee
Posted
Dee, that's very helpful information! Thank you for sharing that. It makes perfect sense. If the body has too little thyroxin, from autoimmunity action killing the thyroid or trauma or whatever, then certain body processes cannot take place. Maybe this is why the skin down there loses veins and capillaries and is devoid o f cells. But why in the genital skin?
Or, is the autoimmunity process attacking both the thyroid and the skin down there?
If increasing your thyroxin (What was your TSH level if you don't mind sharing?) improved your skin then is thyroxin necessary for skin maintenance? You have given me some clues, thank you.
Let's work on this.
deethebee Guest
Posted
when I was first diagnosed with hypothyroidism earlier this year my TSH level was 39, then it went to 27, then down to 1.1.My last blood test which was seven months later has gone back up to 17. am now on 100mgs of thyroxin. we will see where its at in a few weeks time.
Guest deethebee
Posted
Dee,
Do you mean 100 micrograms? "mcg" One hundred milligrams would kill 3 horses.
But a TSH of 39 Wow, that's really high. The pituitary was working hard to get the thyroid going. If it's back up to 17, then your pituitary and hypothalmus don't think you have enough thyroxin yet. Or, it is not getting into your cells. The 1.1 reading would be normal if your body was receiving the thyroxin. Thanks for sharing.
deethebee Guest
Posted
Doh, yes of course I mean micrograms 😂
Guest deethebee
Posted
Will you have Christmas dinner/celebration? Guess we are going to a friend's house. My ex had a stroke and he is not right yet. Happy Holidays!