Sarcoidosis, medicine and possible side effects

Clauric

Hi all,

Looking for some feedback from people using Plaquinel. Slightly long post.

I was diagnosed with Sarcoidosis (Type 2) in March/April this year. Since then, I've been on a combination of Deltacortaril (steroids) - 15 mg maintenance dosage, Nexum (generic) - 30 mg, Caltrate (Calcium) - 400 mg, Altrate (Calcium) - ??mg weekly, and paracetamol - 500 mg as needed.

In June, I was prescribed plaquinel - 200 mg and then upped to 400 mg. Have been on this dosage for about 2.5 months.

However, for the last two weeks, I've been having some weird symptoms and I am not sure if they are related to the meds, mental issues, or another problem.

The problems are as follows:

• Itchy skin on hairy parts of my body. Includes nose, stuble area of face, eyebrows, eyelashes, forehead/hairline, behind ears, scalp, forearms, shoulders, chest, lower back, groin, ass cheeks, shins, knees (front and back), feet and thighs. (I'm fairly hairy!!). It feels like there is an insect walking across my skin in each area, but when I look there is nothing there.

• Getting a lot of red marks on my skin. I know that the stedoids will cause pimple-like marks on the skin, but these are very different. Parts of my arms and chest look like somebody used my skin as a in cushion. Not congregated in any area, but loads of them (stopped counting at 50 today). They are small (smaller than a pinhead diameter), but very red/blood red.

• Keep getting some "spots" that are really itchy. They look and feel very much like insect bites. They are on my shoulders/back, lower back, upper arm, forearm, and thigh. Anti-histamines seem to work, but still sore.

• I keep getting these random shooting pains on my skin. Feels like I'm being bitten by a mosquito every couple of hours. However, when I go look, there is nothing there. No marks, no spots, no evidence of insects/infestation, etc.

I went to the GP today as she is running my treatment - consultant is very expensive and isn't covered by the GMC card. She said that she is not sure, as she has never had anybody on the same combination of drugs, but thinks it could be some of the side effects of the plaquinel. Further, she is not sure of the treatment, and to just use Zirtec and see if this controls it.

I am wondering if any Boardy using the same combination of drugs, or plaquinel on its own, has ever had the same problem? If so, what do you do to control it?

Many thanks for reading.

alexjk

Hi Clauric,

I've been diagnosed with sarcoidosis 4 years now so I might be able to answer some of your questions.

There's no Type 2 sarcoidosis, I think your doctor might have meant that you were in stage 2. Some people categorise progression of sarcoidosis into stages, I think it usually goes up to 5. I've never been categorised like that but from what I gather, stage 2 is a 'good' stage.

Deltacortaril is a variant of prednisone, so you might experience some of the side-effects with that such as weight gain, irritatiblity and moon-face. Sweats might also be a problem but your dose is small enough that it might not be an issue.

You're on the calcium supplements because the steroids will strip your bones and make them weak so this is to try and counteract that.

Keep getting some "spots" that are really itchy. They look and feel very much like insect bites. They are on my shoulders/back, lower back, upper arm, forearm, and thigh. Anti-histamines seem to work, but still sore.

This sounds to me like erythema nodosum, which is an inflammation of the fat cells under your skin. You should mention them to your doctor, a higher dose of the steroids should make them stop progressing. They might never go completely but they might become duller in colour and stop being tender to touch.

For your other questions, I'm not too sure. I haven't taken plaquenil as a treatment so I don't know much about it. If seeing a specialised consultant is too expensive, get your GP to refer you to a respiratory clinic. I went private for treating some aspects of sarcoid and I was really disappointed by it. By luck, I was referred to a good public respiratory consultant who I feel is doing a really good job with helping me to manage it all.

This is my own personal thought but I feel that it's worth sharing. Sarcoidosis is an inflammatory disease (or at least to the best of our knowledge it is). It's possible that you could have some food intolerances that you might not be aware of. There have been studies that demonstrate a prevalence of gluten intolerance among other food intolerances with sarc patients. It really could be worth your while going on an elimination diet to see if that helps in any way.

Clauric

Alex, thanks for the information.

Currently attending a respitory clinic for sleep apnea. My treatment is being run in conjunction with the GP, and the two consultants.

I am trying an elemination diet of sorts. No white wheat (white bread and pastas), as well as more mediteranean foods (tomoatoes, cucumbers, olives, salads, etc). Seems to be controlling the main effects of the sarcoidosis, namely, the swelling of the joints, and pain in my chest/ribs.

With respect to the actual type, the consultant told me it was "Type 2". From his explanation, he seemed to suggest that there were 3 types.

• Type 1 was simply the joint swelling and chest pain. However, there is no permanent damage and goes into regression with treatment.

• Type 2 is more severe. There is temporary lung damage affecting breathing (exacerbating sleep apnea) with up to 15% chance of permanent lung damage. Can also affect other organs, but mainly the heart (currently awaiting scans to check for heart damage).

• Type 3 is the most severe. Permanent lung damage, often requiring breathing apparatus for the rest of your life. There is also a high probability of damage to other organs.I might of course be wrong, but that is my understanding.

Consultant gave me a diagnosis of Type 2, with possible heart complications. He expects 2 - 3 years min on the drug cocktail but could be up to 5 years. Hopefully it is sooner, but guess its wait and see at this stage.

Clauric

alexjk wrote: »

This sounds to me like erythema nodosum, which is an inflammation of the fat cells under your skin. You should mention them to your doctor, a higher dose of the steroids should make them stop progressing. They might never go completely but they might become duller in colour and stop being tender to touch.

Had a look at this condition, and thankfully it is nowhere near as bad a this. More of a dull purple circular blotching on the skin, about 1-2mm in diameter. Currently covering both my arms, and parts of my legs. There is the occasional spot that seems to erupt, much like an insect bite in shape and size (or a large acne spot, without the head).

Can't find anything quite like it on the skin disease/medical websites, and there doesn't seem to be any indication that this is a known side effect for the tablets in stand alone mode.