I have had a nasty flare up about a month ago and was put on predinisone and have just been to see my consultant (so I thought !) but I saw a very young lady who said she could not help me as I was on steroids, ( I finish them tomorrow ! ) so I have to go back next month and then she said she would think about putting me on biologics ...... help.... I need advice to know which one is best, I am in so much pain now I have just taken a couple of painkillers.
Sorry about the moan, tears are streaming down my cheeks as I write.
We have had no electric since the storm on Wednesday so no heating, and I think the cold must have got into my back.
Wendy
Written by
nellysgran
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Oh Wendy you poor thing. Anyone of those things would have me with tears streaming down my face. No power and all those poor people who are flooded must be desperate.
I don't know much about biologics and how you manage things whist you wait for them to work, but I had thought steroids were meant to keep things in check. I know this is what they tend to do whilst waiting for dmards to work but I have very little knowledge of biologics. I'm sure someone on here will be able to help though.
She certainly didn't sound terribly helpful. I sometimes don't think that consultants realise how much we all hang on for our appointments with them, especially when things aren't going well. So to not be listened to, or dismissed without further assistance is so crushing.
I hope someone on here can offer you better advice than me, but hang in there, have a good cry being careful not to flood that sofa, then chocolate and wine does it for me sometimes. Won't help with the pain mind. Rosie x
Thank you the chocolate and wine sound good to me xx
Hello
Sorry regarding your hospital visit, It may be a good idea to have words with your GP regarding your flare up and He/She will discuss Biologics, with you. if you are not seeing your consultant for four weeks you can also discuss your flare up of your back with him as well.
When we were flooded in 2008 we had no electricity and I flared due to the dampness and stress, and I ended up with a mental health crisis team so I can understand how you must be feeling.
When I was bad I warmed a kettle and put warm water into a heat pack, or water bottle. Sadly if you only have electricity you will not be able to heat the water up. If this is the case is there anywhere that you can go to get into the warmth and light etc.
Oh Wendy that is no good. So not even more steroids to tide you over until they see you again that is just cruel. I suffer when it is cold too. Is there anywhere you cab go that is heated? Maybe see you GP see if they can help you in the mean time. Big hugs
Steroids are usually just temporary. Biologics can be wonderful and offer longer term solutions. If you're offered them, look into the advantages/disadvantages but really worth it. So sorry about power cut, if it's likely to persist then it'd be wise to decamp. Hope things improve
Oh Wendy, I am so sorry you are feeling so unwell, and not having any heating much be really making you miserable, I'm not surprised you're so upset and I am sending you a big hug. I know flare ups can make you feel so unwell. I am not stable at present either and my condition is so up and down. You keep hoping that perhaps tomorrow you will wake up and feel better, and when you don't you have another of what I call a 'groundhog day'. As far as biologics are concerned, there are quite a few around and it is a case of trying one to see if it suits you. Apparently they don't all work for everyone, and it's a case of finding one that works for you. Let's hope that whichever one you get, it's the right one. If it is you will be swinging from the chandeliers any time soon. Will be thinking of you and I hope your heating comes on very soon. Take care Pat x
Sorry Wendy .. what a time to lose power when you are feeling bad with your joints. Hope soon you can go discuss biologics and get started on something to turn things around. I am hoping to start a new med soon and have been patched up on steroid jabs. This rain makes my joints crazy. It is so hard not to cry (been there .. think one should to relieve it all)) and hard to be patient but I am sure soon you will be settled on a med that works for you. I am on the priority list with British Gas to have an engineer if the boiler conks out etc due to having RA/OA and it is worth people asking to have that (no extra cost) or enquire if other providers have this service. It is usually offered to people with special conditions where you can't get cold, and to homes where there are babies. However, if it is storm related etc I guess that is different. It may be worth asking your heating provider for the future. Four years ago in one of those mega freezing winters our boiler broke down. It was not possible to obtain the part as the boiler had become obsolete. Had served us so well for 15 years. However, as it was minus 16 ... and the De Longhi oil filled radiators weren't making too much difference, and we just had to wait four days for the part to be sourced and posted to them .. we went to a friend's hotel and he gave us a lovely room foc. It was beserk though as our hotel bedroom C/H radiator would NOT turn down whatever we did so we went from the Arctic .. to the Furnaces if Haedes!! I had the window ope at one point LOL. We now have very wonderfully toasty boiler & C/H so no problem but that one day/night without heating was awful but we did have electric so could have hot drinks and do hot water bottles. Hoping you are soon warm. Love and warm hugs xx.
Oh poor you Wendy that really does sound like a bit of a nightmare. As others have asked is there anyway for you to decamp until the power is back at least?
I know when I came off Pred the week before seeing my rheumy I had a horrible few days with a flare but it calmed down with Naproxen.
The only way I'm currently getting through the cold weather of the far north of Scotland is by spending half my life in bed under the duvet or getting into a hot bath to heat up as my Raynauds is really bad just now. So all I can do is sympathise really as we have had periods of no power up here but not since my RA/ Raynauds started. Its my absolute dread. I really hope that once you get onto a biologic things are transformed for you. Tx
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Just a rant !
Sorry need to vent !!
Just had a hospital appointment could cry with frustration.....
I need a moan
Just a little update on a diagnosis.
