It has been such a long time since I have been in this space or written anything.
I had a really nasty flare and and continuous colds that I thought it would never end. Since last year April I have had reoccurring boils and carbuncles. Due to Covid-19 I have not seen a GP because they would not allow me to come in and they kept sending antibiotics none of which worked, the boils, carbuncles would hurt, burst, heal and reappear in another part of my body. It wasn't until I came out of shielding in the middle of June that I managed to get a GP appointment, who just said they were boils and gave me more antibiotics.
February this year I went in for my Ritix infusions which went well considering I hadn't had them for over a year and right after the first round I came down with one boil and one very large carbuncle, more antibiotics and they went away. Only for another 5 to reappear after the second round of Ritix infusion. Not only this but now I was exhausted all the time, I mean I get out of bed walk to the bathroom and would need to lay down right there because I was so exhausted. I kept having hot flushes and just feeling like I was coming down with the flu only it never happened. I got worried and thought it was Covid but was tested repeatedly and it kept coming back negative. So when these 5 boils appeared I called the GP and insisted I be seen, I told her I have had over 6 rounds of antibiotics and this keeps happening, clearly something is wrong. When I finally see her, she tells me these are not boils they are abscessess and they are antibiotic resistant because a sample has never been taken of them when they burst. They were hurting so she said she would not lance them but give me an antibiotic cream to put on them, wash in Dermol 200 and stop taking the Leflunomide. After 4 days of pain that can only be described as the Devil prodding me with his fork three of them burst, no relief from the pain, they took a swab (district nurse) and they had to come every other day to pack the holes they left, to keep an eye on the other two and I was having to take so many painkillers, never thought anything could hurt so bad.
Finally after a week the GP said she got the results back and sent me some Co-amoxiclav but the result has been really bad diarrhoea which the nurse told me to stop taking and asked the GP to find an alternative and my rheumy nurse was like until this clears up stop all drug therapy and stick to painkillers and the antibio; only for this morning my GP called to say she she's not going to prescribe anything and the other two are still there hurting the crap out of me; I am at a lost right now. So freaking sick and tired of being/feeling sick and tired. Has anyone else experience this or does anyone have a suggestion on how I can end this nightmare. Sorry it's such a long arse rant today.
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Paisley58
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thank you so very much, a hug is always welcome and very much needed. Thankfully, others have suggested a dermatologist, which I have got a referral to, and looking into getting my blood checked for deficiency so that I can look into taking the right set of vitamins to support my immune system as maybe what i am taking isn't enough
Oh I really do feel for you so much. What a nightmare. I know about boils too I used to get a lot of them some years ago and ended up having tests at hospital. Luckily I seem to be better now. Just the occasional one.Think the time has come for you to be referred to a specialist you can’t carry on like this , your very “ run down”. And that will hinder you getting better. Mine was caused by my blood being out of sorts .
Yes, it seems to be the case, immune very low, they think it is due to a combination of shielding, infusion and leflu treatment. Currently on penicillin and waiting for a referral from the dermatology department to come through, hopefully there's light at the end of the tunnel.
thank you so much, and I love flowers. Things are improving with the use of penicillin and my GP has agreed to send a referral to dermatology, fingers crossed all will be well soon
I am so sorry to hear what you are going through. I wonder if you need to be referred to a specialist such as a dermatologist who can perhaps get to the source of things and hopefully treat what sound very painful and persistent nightmare for you. Let us know how you get on wont you. Take care.
yes, that seems to be the general suggestion, so I have gone with that idea and pushed GP to refer me to a dermatologist, it's a waiting game now. Currently taking penicillin to get rid of them
Hi, Is this Rituximab you’ve had recently? I’m not sure if yours is a different brand of it. Maybe a biosimilar, but whichever brand it can make your immune so low you can get all sorts of infections. Especially just after you’ve had it. I haven’t had boils though. Sounds like you may need them looked at but as we know it’s hard to see anyone. I agree with Pip, I’d want a dermatologist to see them. They would be able to prescribe something else topical for them. More specific. Hope you can ask your GP to refer you. x
yes, that was the first thing they checked as it runs through the maternal side of my family but it came back negative, being treated with penicillin and waiting for a dermatologist appointment
I feel for you, what a horrible nightmare. I found my system got very low when I took methotrexate which made my RA worse not better. My immune system crisis showed up as thrush, impetigo, strep infections . I broke out of the cycle by putting myself onto a good level of vitamin pills, a general one, a high vit b for mood and omega 3 for joints. Made such a difference. I also hade my vit d blood level checked which was very very low.GP prescribes that for me now. That helps with my immune system. I then changed to lefludamide and have been much better since. Hope you get to better soon
Thanks, it is good to know that is due to low immune system. I have been taking omega 3, vit b, iron due to blood disorder, vit c and now back on vit d3 but will look into getting checked, maybe I am deficient in something else
That's a horrible experience. I hope you get to see the dermatologist soon. Your description reminded me of my friend who had very similar issues, after many testes and various specialists she finally had a diagnosis of something called "hidradenitis suppurativa" which is another autoimmune condition. She never had any symptoms of typical RA and never took any meds for that. It took her several months to get diagnosis. Currently she is taking treatment from a Dermatologist and her condition is well controlled. Last I heard she was taking Humira and was very happy with the results.
Good that you are seeing dermatologist. Hope you get things sorted out soon. Take care. Another thing that helps is diet, this same friend told me that eliminating sugar, wheat & dairy had positive effect on her. Also going on plant based diet has worked well for her.
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