SLE and fibromyalgia?: Hey guys so I recently saw a... - LUPUS UK

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SLE and fibromyalgia?

Stephanie0210
Stephanie0210

Hey guys so I recently saw a new Rheumatologist and he said that I had both fibromyalgia and SLE. I'm only 20 by the way. So here I am quite baffled about everything.

I'm here because he started me on dexamethasone because the prednisolone was so much harsher on the stomach however as I've started it, I feel so out of it. Does this make you put on weight as much as the prednisolone? I don't like steriods at all, I usually lose my appetite and its just a bad time for me.

In accordance to the plaquenil, I've also started taking a new drug called azathioprine. I was just wondering if anyone takes it and would warn me of any side effects that I should prepare for? Or is there anything that I should look out for and keep ensuring stays healthy in my body ie organ function etc?

Thank you guys for always responding and helping me get through this! I dont know what I would do without the forum and all the help received!

I look forward to your responses and thank you in advance!

11 Replies
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I read that you'll never have just FM as it comes under the Auto immune family of some 80 conditions. Personally I don't care too much to find out actually how many more related illnesses I have as so far the prognosis are all the same...

No real treatment & no cure.

Just need to learn how to manage ur conditions which I find can change over time - a bit if a roller-coaster but you get there at the end. All the best...

Thank you for your well wishes

What are your symptoms/labs?

Its been 3 years since I was diagnosed with lupus and there has not been any remission phase. I was constantly on pain medication and then they started looking into changing the coarse of treatment. I change 4 rheumatologists before I finally got to this one doctor who knew what I was about.

I have a ++ana test and everything else in my bloods are basically high or low, nothing is within the range. When I started the plaquenil, it helped everything come back to being within range, however the ana remained at ++. Everytime I'm experiencing pain, I.e with respect to my bones and joints etc, the pain is so excruciating that I cannot be touched. My bones and joints are fragile and brittle. It also causes severe chest pains relating to breathing problems hence why I have an asthma inhaler even though i dont have asthma.

My medications have been changed. So I'm taking dexamethasone for the inflammation in the joints. Recently, this new thing has been happening where I'll be standing or doing anything and I'll get a sharp pain in either of my legs and fall to the floor wherever I am and I'm unable to get up and walk or do anything or even apply pressure to that leg.

I've also started another drug called azathioprine but I cannot start it yet because of gastritis and I have to wait a while for that to heal.

So yes, this has been the current situation.

maybe you should ask your doc to give you something specific for fibromyalgia. there are several medications that treat that.

I have taken azathioprine before, however, it did not suit me. It caused my liver enzymes to be raised, so I was taken off it and my liver enzymes went back to normal. I am now on mycophenolate mofetil. Once you start on azathioprine, your full blood count and liver enzymes should be monitored regularly. Some people do not have side effects on azathioprine; unfortunately it's a trial and error with lupus medications and many of them take several months to kick in.

Chanpreet_Walia
Chanpreet_WaliaAdministrator

Hi Stephanie0210,

There are potential side effects of Azathioprine which I have listed below:

Common side-effects: nausea, vomiting, loss of appetite, low white blood cell counts, infection

Uncommon side-effects: rash, liver inflammation

Rare side-effects: mouth sores, hair loss, lung inflammation

According to The Lupus Encyclopedia, it is advised to avoid cat's claw and Echinacea when taking this medication and to take the medication after eating. This can help avoid an upset stomach.

It is important to remember that lupus affects each person differently therefore, no two people will share the exact same experience.

According to The Lupus Encyclopedia, around 20% of SLE patients will also have a diagnosis of fibromyalgia. The FMA UK website provides information on fibromyalgia and its symptoms as well as useful links for local support networks, advice and over-lapping conditions: fmauk.org/

Please keep us updated, wishing you all the best.

Thank you do much for taking the time to respond to me. I appreciate it very very much. Will keep you updated!

Stephanie - sorry this reply is late. I have had lupus (SLE) for 28 yrs and also a liver disease dxed at age 21 (I am 53), so i have taken Plaquenil and Azathioprine for ages. I find they are helpful and have minimal side effects. i hope you find the same. They have allowed me to be healthy and active. You will get out of your pain -it takes time to get things right with lupus, but you will get there! Main things for these drugs: get your eyes checked regularly with plaquenil, and wear sunscreen etc with Azathioprine as it can make you suseptible to skin cancer. good luck!

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