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Rank: Member
Groups: Registered
Joined: 2/13/2010
Posts: 24
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Hi everyone,
I was wondering if anyone can help me. I won't repeat what was in my other thread. But basically I've been feeling much worse over the last few days so I think I'm experiencing a flare and that my previously diagnosed PA is now RA. My joints are very painful (sharp pains throbbing and aching deep in the bone) I slept terribly last night 'cos no position was comfortable and I've been pale shaky and feel like I've got magma in my veins. I now feel very limited in what I can do - bed rest mostly. This has changed rapidly over the last three days. I now feel too unwell to function. I saw my GPlast Tues & she has been very helpful- sending an urgent letter to rheumatology to get me an appointment, but I'm worried cos last time that took about 10 weeks. If it's not a really stupid question what do you do to get treated quickly when you're having a flare. I don't think NHS direct will be much help and I'd rather see a GP I trust than an out of hours one, although I nearly called one tonight, as I felt so desperate I didn't know what to do. All this is made more complicated because we are hoping to have IVF in 2 months as this flare was triggered by a miscarriage.
Please tell me what you have done if you've felt this ill as I'm feeling pretty desperate now.
love Angel
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Angel,
Firstly, can I say how truly sorry I am about your miscarriage. I had one myself seven years ago and I can remember how absolutley devastated I felt.
Regarding your RA, whenever my GP has sent an urgent appointment request to any of the consultants I've been referred to in the past, I've been seen really quickly. But I do think that it all depends on which PCT you are lucky enough (or not) to fall under. I would go back to your GP first thing tomorrow morning if you can and ask for something to see you through the next week or so until you can get to see a Rheummy.
Flare ups can really knock you for six but could you maybe still be feeling the physical effects of the miscarriage? I remember feeling really rotten for ages afterwards while my body was adjusting again. Regardless of the cause, I'd get off to the docs especially seeing as you are feeling so much worse than you did when you saw the GP on Tuesday.
Please let us know how you get on and I hope you get an appointment really soon
x x
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Tomorrow morning ring the surgery first thing and get a GP to visit at home. Warn them ahead that you are in a flair and that could the GP bleep the rheumatologist or registrar and ask about depomedrone injection, whether to give one/ what dose?
it might be that your oral steroid is put up in the shorter term to get you over this awful time.
You need the GP to then make sure you get seen in the emergency rheumatology clinic.
OR if this doesn't pan out (or a lot of pain)- get to A and E. none of us like doing it but they can do the above.
Longer term you need some BIG GUNS pain relief for when things are like this and there are a number of options like tramadol, codeine etc to help.how to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Angel Totally agree with Jenni. First thing tomorrow on the phone to the surgery for a GP home visit. You are not well enough to go to the surgery but need to be seen very urgently. In the meantime take what painkillers you have as often as you can and drink plenty of fluids to keep hydrated. If you can stay in bed with loose covers to avoid unnecessary pressure on sore joints. If you really feel so unwell that you can't hold out until the morning get your partner to take you to A&E where at the very least they should be able to sort out some immediate pain relief. Wish I was nearer so I could reassure you a bit more but hang on in there things will improve. Take care Angel and let us know how you are tomorrow. Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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PS. You WILL get better- this WILL pass.how to be a velvet bulldoser
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Rank: Member
Groups: Registered
Joined: 2/13/2010
Posts: 24
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Thanks for your quick replies. Am planning to see a GP tomorrow with my other half for support. I am not on anything other than painkillers at the moment as the rheumatologist I saw before pretty much refused to treat me as we were TTC. I had already started ivf by the time i got a follow up appt with him & my symptoms went into remission with the hormones I was taking, so I didn't pursue it then. I am in the process of trying to find someone more supportive, but now my symptoms are much worse so we're going to have to push harder.
It is a bit weird though- I can feel at deaths door for a few hours (it feels like when it's active)I feel sick and just generally really ill, then it does lift a bit leaving the joint pain. It's all a bit rubbish! Thanks for saying it will pass Jenni I really need to hear that at the moment.
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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thinking of you this morning angel and that it goes ok. That nasty flare will go. Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hope all goes well with your GP. I am sure you will prescribed something even though you are TTC. Better pain relief would be a blessing. Thinking of you, Lyn x
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Rank: Member
Groups: Registered
Joined: 2/13/2010
Posts: 24
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Hi everyone,
Thanks again for your support. This forum has been really amazing and helped me get through this terrible time. Just a quick update. My other half took the day off work and came with me to the surgery ( I'm sorry i ignored your advice about the home visit, but my surgery is about 10 doors up my road & was keen to see my own doctor and not a random locum). I got my blood tests done by the nurse and explained everything to the doctor about how much worse I'd got over the weekend. She was fantastic & she was about to do the steroid shot but rang and got advice, there and then, from a rheumatologist who was keen for me to take a high dose steroid for a week then drop it down. She's given me something to protect my stomach too. My GP's going to ring my IVF clinic to check this is all ok with them and call me later to let me know. The rheumatologist said it's what she prescribed to people with RA who were pregnant if they still had symptoms. The only thing I'm a little concerned about is I've heard they can affect ovulation, but at this stage I've been feeling so ill & getting worse not better so I think I'll just have to go with it because I'm sure feeling this ill would also affect the chances of it working anyway. If I can just get it to calm down maybe my body will get back into more of a balance and we can try again. At the end of the appt I was so grateful to the GP I said "I feel like giving you a hug" she said "come here" and actually gave me a hug. I think they should give those out with every appointment!
Angel x
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Rank: Advanced Member Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Angel, I'm so glad you had such a good appointment with the GP this morning! Now that you've got your hands on something stronger you should start to feel a whole lot better. It makes such a big difference when you have a supportive doctor who understands and gets things done. Another big hug from me too  Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Angel,
I'm so glad you've got some help from your GP and hope the steroids work well for you.
I think you are right to get this sorted before the IVF because ,as you say, feeling so ill could affect the chances of it working anyway.
Get this flare under control and hopefully you can continue the IVF soon.
Love, Doreen xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Angel So pleased to hear that things have gone well. Sometimes even the reassurance of a medic can help to alleviate the stress. It's great that your GP has taken the time to listen and follow through on what you had to say. Once you start the steroids you will feel a massive difference and your joints should start to settle down quite quickly. It's possible you wouldn't ovulate anyway whilst in a flare so it will really benefit you to get it under control quickly. So, hope it's good news from the IVF clinic this afternoon. Cyber hug coming your way! Keep us posted on progress Lyn x
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Rank: Member
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Joined: 2/13/2010
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Thanks for that bit of reassurance Lyn, I am probably being a bit of a baby but I have a sensitive stomach at the best of times & I'm really quite frightened about taking them, but I feel I have no choice now. The doctor did ring back as promised, but hadn't been able to speak to my ivf consultant directly. The nurses there thought it would be ok, but the consultant will call me back to say yes or no, don't know when that will be. I've been prescribed 20mg prednisolone for a week dropping to 5mg after that. Has anyone else TTC on prednisolene & been successful?
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi again! You will be just fine on the high dose of prednisolone short term and I would have thought it unlikely to upset your stomach. I have taken prednisolone in varying doses for almost 22 years, (started after the birth of my daughter) and in that time been pregnant twice and had three babies! (Also investigated for sub fertility twice and had Clomid treatment in the middle!) So stop the worrying!! You are going to get better and get on with the job of TTC. Hope you are feeling better soon; keep in touch, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Angel, Glad your GP was so supportive, and was able to sort out some quick treatment for you. I hope you start feeling better very soon. Take care, Kathleen x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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that is good news- the 20mg will be fine. just dont tamper around with the dose until you see the consultant in emergency clinic. 20mg is not a massive dose but you will definately feel it!
Jenni xhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Angel
Pleased to hear that your GP was so supportive and, hopefully, the steroids will do the trick.
Please let us know how things progress.
Thinking of you
Love Jeanxxx
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Rank: Member
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Joined: 2/13/2010
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I spoke to the IVF consultant he's fine with low doses of 5-10mg, but not sure about 20mg, so feeling a bit like I needed an answer amazingly I managed to get through to the same rheumatologist my GP spoke to this morning & he was very helpful he said they aimed to find the lowest dose possible that would work so if I want to I can start on 10mg & I should notice a difference in 48hrs if it's not enough then increase to 15mg, likewise if it is enough, the following week I can drop it down to 5mg. He was very reassuring about its use in pregnancy as he said 88% doesn't cross the placenta for prednisolone specifically. So I'm going to try 10mg tomorrow & pray it works.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 856
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Good to hear you got the help you needed.
Maria x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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I am pleased that they are all advising and supporting you, praying that 10mg into you. DO REST and gently move each joint until this passes.
Love
Jenni xhow to be a velvet bulldoser
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