Unbearable Itching

[chucch]

Does anybody get really itchy all of a sudden to the point where it is unbearable?

Not sure if its too much salt that triggers it off, as i did have 3 packets of crisps today....

[bethsuejane]

Early this year I began bouts of ferocious itching to the point of distraction, mainly in the mornings. Piriton helped but made me drowsy. eventually i was taking that at night and cetrizine in the am but had little effect and very hot baths were the only way of getting some relief. I was truly desperate!

I stopped my Hydroxychloroquine in June and after 4 days it reduced, after 10 it was gone.

After getting no help from my rheumy or GP I saw a dermo privately and in October an NHS one. Both said it was the Hydroxychloroquine despite the rheumy saying it couldn't be and my Gp saying I had an 'annoying itch' of unknown origin and refusing to refer me to anyone.

I went without any meds for my Lupus, except for short doses of prednisolone when flaring badly, for 4 mths while waiting for Rheumy appt then was put on Azathioprine which took another month to be prescribed as had to wait for a nurse appt. I was really sorry not to have Hydroxy as my flares were coming under control so the decision to stop it was not taken lightly.

Docs in my experience cannot empathise with itching as they don't see the bouts and the distress it can cause. If yours continues and you cannot identify what causes it please don't struggle along but demand they help you. If you are on Hydroxy google it with the word pruritis (itching) and there are well documented cases.

Good luck! Beth.

[Looby in reply to bethsuejane]

Thanks for this Beth....I have been "driven" to reduce Plaquinel too (after chatting this over with GP who was at a loss to know what to suggest!) My head was sweating profusely and had the sensation of "hot needles" all over my scalp - the only relief was running my head under cool water in the shower. I have gone down to 200 mg just once a day (after lunch) and the discomfort HAS decreased. However, there IS a trade-off, because my joints are starting to ache (this is after 2 weeks). It is a relief though, just to have a break from the itching, that - apart from driving ME mad, is embarrassing when in company!

[bethsuejane in reply to Looby]

I'm glad you're getting some relief from the itching at least!

I too was upset at having to give up on the Hydroxy and suffered the return of all symptoms. Had to have short courses of Prednisolone 3 weeks at a time) when it got too bad from June till 3 weeks ago when I started on Azathioprine. So far so good! My bloods are ok and I actually feel like I'm going into recession!! Hardly any pain, much less tired, sleeping better and not so muddled!! Yahoo!!

[Gecko in reply to bethsuejane]

I have been off those meds for two years, and I still get that crazy itching. Usually comes a day or two after being in the sun.

[MrsB2nd]

Hi

I have been diagnosed with Lupus for just over 18 months now, and on hydroxychloroquine ever since, so I know this is not down to the medication.

In July this year I had a flare up which included itching, starting on my feet and working upwards, with a rash. I was ill for a week with this flare up and given steroids. Over the weekend after I started the steroids, I noticed the itching was worse when I got out of the shower, driving me insane. I spoke to the pharmacist who said that this was due to the skin sensitivity aspect of Lupus, as the pores are more open. The flare and feeling ill eventually died down, but the itching after a shower persists even now, though not as bad. I use Sanex 0% to wash with in warm water. I tend to soap myself then very quickly get into the shower and out as quick as possible. What is strange is that if I have a bath, the itching is really mild, if none at all.

It is not my shower that is the problem, as wherever I go this happens, now I am not in flare it is usually my legs that are affected.

You have my sympathy

[roobarb in reply to MrsB2nd]

I have the same problem after the shower, MrsB. Really horrible itchy, burning sensation of the rashes on my legs. Very odd!

[0573 in reply to MrsB2nd]

The same problem here some lotion on the skin helps a little with itching but this is crazy. Never had such a skin problems before ... is it maybe caused by hard water?

[Sue2803]

I have suffered from terrible bouts of itching for years, even before my lupus/aps diagnosis. My GP prescribes Cetirizine, doesn't completely stop itching but does ease it somewhat. Other than that, I just use unperfumed products etc as much as poss. Do not use soap at all, as I know this makes it worse.

[roobarb]

My itchy rashes always seem to coincide with a flare up of my other lupus symptoms, & can be completely unbearable. I don't notice that it coincides with what I eat. But definately with how my lupus feels, & after a shower. A dermatologist diagnosed it as sub acute cutaneous lupus, & it was only then that the rheumatologist started to treat me for SLE, even though I had been seeing them for years. The rheumy had told me it would go away if I stopped scratching it, very helpful! The lupus meds help, the rash went away when I was on azathioprine, but I had to stop that due to side effects. Now on prednisolone & that seems to keep the rash & itching under control most of the time.

Best wishes chucch. X

[Sher78]

I get it every so often, u end up itching 2 the point u bleed & there doesn't even have 2 be anything there 2 start u off! I find mine tends 2 come on when I'm stressed, run down or over anxious. Plus, as Roobarb says, water seems 2 agitate it once u've started, so make sure u always dry the area of irritation properly, obvious I know, but so many of us don't ;0)

[Sher78]

There is a moisturiser u can get on script called 'Doublebase Gel' which has something in it 2 calm the itch. I tend 2 use this when I get the patches on my legs & it's fab

[Patchi in reply to Sher78]

I'm going to try it! Thanks

[bethsuejane]

Sorry I forgot to say that I have had the after shower itching for years and for that reason never have one, only baths and even then can have an attack if the water is too cool. My daughter has started to have the same problem and has researched it.........Aquagenic Pruritis......... the difference with the drug induced itching is that it lasts longer, is even more intense and stops when the drug is stopped. Neither have ever produced a rash on me.

Hope you manage to gain control of it. Good luck, Beth. XX

[glasgowguy]

well am not the only one who gets the itchy legs arms, and you can scratch scratch and scratch but it just makes you draw blood, having to play mind over matter, but the burning sensation doesn't go away and i was on azathyroprine for years then it decided to go for a wee trip to my kidneys, which floored me,which is stopped now, now on prednisolone gradually reducing all thanks to the renal consultant up here fab doctor knows his stuff, but the weight has gained over the year and a bit. and i find this group helpful in dealing with this sle.

[JGCongle]

My skin is itching and it feels like it's on fire. I take hydroxcloroquine 200mgs in the am and 200mgs in the pm. I also receive a benlysta infusion once a month. I take benadryl and it calms it down, but it's getting worse and it hurts very badly; I have no idea what to do.

[cinlee57 in reply to JGCongle]

try an antacid like nexium its suppose to have an antihistamine in it it worked for me last time today I have the itch I took 2 benedryl and a anti acid pill. anti itch cream seemed to make it worse direct ice pack now seems to be calming it down

[ruthgriffith in reply to JGCongle]

try frankincense   oil  it helped my sister  when this was  happening to her 

[Newbietolupus in reply to JGCongle]

Do you like the Benylsta.

Can't you stop the hydrocloroquin since your on the benylsta ??

[imrightbell in reply to JGCongle]

I take Doxepin for itching. I told my dermotogist if he did not stop the itching I was going to kill him. Lol. The Doxepin jelps a lot.

[ruthgriffith]

nexium  can cause liver damage

[sonia70p]

Sometime having too much salt such as sodium, potassium, ammonium, magnesium, chloride in your body can cause not only high blood pressure but also itchy arms. Avoid the sea salt too as it can penetrate the skin.

[Tiras]

I use coconut oil daily, I apply it 2 to 3 times a day, for me this has worked really well. After a shower I don't dry with a towel, I apply the coconut oil, then air dry and let the oil absorb in to the skin. I try not to put any clothing on for 30 to 45 minutes after I shower and apply the coconut oil. I very seldom if ever itch now.

I especially keep coconut oil on my right foot.

Tiras

"The Barefoot Gardener"

[The_Guru1]

Well, my name is Jeanine. I'm run living with lupus one day at a time here across the pond in the U.S..I has unbearable itching, night sweats, chills , severe weight loss and to top it all off after 39 years a pain under my arm and on my spine that would not stop. Each night I wake up, take Benadryl, which if you have fibromyalgia is very helpful, change shirts go back to bed!!

Finally, I asked my chemo/ oncologist..I have Hodgkin's lymphoma. Yaaay new disease time!! Not what I wanted under my tree but at least I know why I itch. I came of the hydroxychlorquine....don't!! If you want to last as long as me keep it going!! The itching is not from that. It can be a combination of all the meds we take, no one's to say. But do get yourself checked for Hodgkin's..j.i.c. #livingwithlupusonedayatatime(let's bitch!!)

#livingwithlupusonedayatatimesubscribeYouTubevlog

[JulieAndrews-]

I have had itching from time to time, recently it has been so severe that I have to take 50mgm of Benadryl every 4 hours. It seems to help for a limited period of time. I am on Hydro and Orencia. I also have rheumatoid and osteo arthritis. My mother died of lupus at 27. My 1 son and brother also have an auto immune disease. I have an infusion tomorrow and will be talking to the nurses.

[NeuronerdDoaty]

I do. I have to take a Benadryl. If I don’t I break out in hives. Not hives like you get from things outside your body but lupus hives. They’re more like whelps. If I don’t stop that I’ll go into angioedema. An epipen doesn’t help. I have to shoot myself with a needle and solu-medrol and head to the hospital. April-October every year.