Posted , 5 users are following.

Hi guys,

Been a while since my last post. Hope you are as well as can be. I'll try and keep it short (as i can)!

I've had a rotten last couple of months. I was seemingly being nicely controlled on Cimzia, i then got meningitis and they also discovered i have a problem with my brain. I have been incredibly unwell since then and have awful asthma that was retrigged from childhood by the meningitis. The last 2 weeks i have been getting over pneumonia alongside. Of course i have had to stop all RA meds as I am not well enough to be on them and in the 2 years i have been diagnosed i have never ever been this bad.

This last week i have spiralled massively, my ESR and DASA's just continue to go up and i am swollen and so sore in my ankles, knees, elbows, index fingers, thumbs and knuckles and i am struggling. Probably more so with everything else. I had a steroid injection last week which this time does not seem to have helped at all. I have to be careful with NSAIDs with the asthma as i am currently on tablets, 2 inhalers and a nebuliser.

I am taking as much herbal stuff as i can aswel - i mean all the stuff that is supposed to help RA along with anything to boost my immune system and probiotics with all the antibiotics and IV antibiotics I have had in the last 2 months.

Just wondered does anyone know of any good gels or anything that work?! Not ibuprofen based ones? I am using tiger balm and deep freeze/deep heat seem a bit useless. Any suggestions would be most welcome please.

Sorry for my doom and gloom post :-(

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  • Posted

    First, be sure to check with Rheumatologist about anything Herbal. For example, you said you are taking things to "Boost your immune system?  You DO NOT WANT TO BOOST IMMUNE SYSTEM.

    That is our problem -- over active immune systems. 

    So-- No ECHINACEA  or that kind of thing. 

    No rubs will help, I don't think. 

    Soaking in Epson Salts, warm baths, or cold, or back and forth. 

    Accupuncture might give some short term relief. 


    It;s hell. I know, But check out anything Herbal with doc. 

    Good Luck. I had pneumonia for three months last year-- so, I remember the pain. It's tough. 

    Try to do some meditations from you tube to distract your self and help with the pain. Jon Kabot-Zinn, that's his specialty. There are a ton on youtube- I use them a lot. 

    Take care.


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  • Posted

    Oh my gosh Sarah, I am so sorry to hear you are having such a rough time of it. When it comes to pain I have found for me that ice works best I leave it on my joint until all the peas are almost thawed. Ice helps with the inflammation,  I use small frozen bags of peas, always have several on hand. Also I use a product called bio- freeze, you just rub it on and then if it's just one joint hurting then I use one of those heat pads that you stick on. Also ginger tea is a help with the pain. I saw this on another site where the person used fresh grinder, grated some and boiled it for a while and cooled it and would drink it off and on all day. If you are not familiar with ginger if it's too strong it will burn the mouth.  Organic ginger tea is also good and so is green tea. Good luck and I wish you all the best, Jo

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  • Posted

    Aw, Sarah, what a lousy time you're having! I haven't found any rubs or gels to help me. I do find ice packs good though.  Can you not have oral steroids to cover you while you're off your other meds?  When I had to stop my meds (Benepali and mtx) earlier this year I was prescribed 30mgs oral prednisolone-(local steroid injections didn't help me) I'm now back on the Benepali and reducing the steroids. I really hope you get some relief sooner than later. Carol x

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  • Posted

    Hi so sorry. I recently had a steroid injection in my hand and my rheumy doc sprayed it with this stuff which deadens the pain. It was very good and I asked her if I could use it for general use and she said yes but not sure if gp would prescribe it. I have not checked if its available from pharmacy but she said it may be. Its not same as the freeze sprays you mention its much better. Not sure how often you can use it but worth checking out. Good luck.
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