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Scleroderma & Raynaud's UK (SRUK)
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Medication

Hi guys,

I suffer with Raynaud's (30 yrs) and Erythromelalgia (9 yrs)

I had an infection in a tooth recently and my dentist gave me METRONIDAZOLE tablets. For the first time in the 9 years I've been suffering with numerous daily EM flares, on the 3rd day of me taking these meds for the infection (abscess) I never had a single flare up of EM. It lasted 4 days... 4 days of not having a single flare up of the EM that's usually as regular as clockwork.

4 whole days of heaven!!!

I'm wondering if anyone else has had similar happen when taking these meds?

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VVVVV interesting, thanks!

I’m 64, and a peculiar case of contradictory early onset overlapping immune dysfunction & connective tissue disorder comorbidities (infant onset Systemic Lupus Erythematosus + Hypermobile Ehlers Danlos Syndrome + Primary Immunodeficiency (hypogammaglobulinaemia (chronic immunoglobulin G,A,M deficiency) bone marrow dysfunction resulting is chronic persistence pattern multisystem infections including constant pockets of simmering nacteria-driven sepsis in sinuses, stomach, kidneys/urotract + elsewherr. My early onset secondaries include sclerosus-related simultaneous RP + small vessel vasculitis & sjogrens...my RP became simultaneous with EM in my 40s-50s a few years before rheumatology & immunology FINALLY figured out my long term pre-immunosuppression meds hypogammaglobulinaemia was (by then i was infested with chronic infections))

My life has been plagued by oral inflammation & infections (inc osteomyelitis of upper jaw bone). I react extremely badly to many types of antibiotic especially metronidazole, but extremely well to coamoxiclav aka augmentin, which immunology has me on indefinitely for the hypogammaglobulinaemia.

My fav reference on EM is this one (you probably know it already):

rarediseases.org/rare-disea...

After reading your post, i reread it to see if infection. Is included in the section on related disorders ...and here is what i found:

As mentioned above, erythromelalgia has also been reported in association with a number of other underlying conditions and disorders. These have included other myeloproliferative and blood (hematologic), connective tissue, and neurologic disorders as well as certain disorders of the heart and blood vessels (cardiovascular disorders), musculoskeletal disorders, infectious diseases, underlying benign tumors or malignancies, and/or other disorders and conditions.

FASCINATING....thanks again! Am going to ask Immunology & rheumatology & oral surgery about this! XOXO

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Jeez, and I thought I had things bad. I don't know how you cope Barnclown, I take my hat off to you having to go through life with ALL the conditions you're plagued with and constant obstacles you must have to overcome.

I couldn't do it, that's a fact!

You are obviously an extremely strong willed person, hopefully with a good network of medics, family and friends helping you.

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Reckon the most important things are:

keeping my case in perspective

+

my funny-bone healthy

this wonderful forum, & several others here on HU, eg Lupus UK, make ALL the diff to me...and the info-sharing in your 2 current posts is a really good example of exactly why HU can be such a lifesaver.

Thanks again XO

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Hi XWoman

I’ve had Raynauds for 55 yrs and Erythromelalgia since birth. The only meds I’ve used that helps my daily flares is Paxil 20 mg.

My Neuro specialist at the University of Michigan USA put me on this and it really has helped me. I still flare up all over but this is when I have too much sodium which is a major trigger for me. I get 2 for 1 with Paxil as it is also used for depression which I certainly never have while on this meds. Dr. Feldman specializes in Erythromelalgia. I am so blessed to be her patient.

Maybe Paxil might be good for you too.

Take care and best wishes. 😊🌸

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The Venlafaxine I take are also for depression. They work by calming down the nerve endings or something. They do help my flares. That said I still get at least one flare every day/evening. They have reduced my symptoms by about 70% but it seems my body is getting used to the meds and so they're slowly not working as well as they did at first. In the beginning of taking these meds my eyesight was improved 100% but now I'd say they are only helping by about 65% and I'm also getting the eyeball flares again - which are very very painful.

Annoyingly though even though the Venlafaxine are a depression medication, I still find that I'm quite depressed. Maybe I'm just feeling sorry for myself and wishing for my pre EM life back, especially now that my sons have left home and I'm on my own all day, every day. That's why I got myself a rescue dog last September, at least I have some company and someone to talk to, even if she argues with me worse than either of my sons ever did. Lol xxx

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