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Date: 30.09.2013
From: Emm

Subject: Fluid replacement?

Hi all, has anyone heard of synovial fluid replacement injections, or even had one.
Would love to hear anyone's experience of them.
If indeed they are offered to sufferers.
Cheers everyone.
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Date: 01.10.2013
From: Patricia

Subject: Re: Fluid replacement?

I think this is what my rheumatologist has referred me for - in my knees :-) He offered the choice of steroid injections or some 'cushioning gel' injections done under local anaesthetic. I am still waiting my appointment. He said that they are more expensive than the steroid injections and therefore they have to order them in hence the wait. Not sure if this is the same thing as synovial fluid replacement injections but my hunch says it is. When I have it done I will let you know......
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Date: 01.10.2013
From: Emm

Subject: Re: Fluid replacement?

Thanks Patricia,
I don't see my specialist until December. I am going to ask about it then.
I would be grateful to hear how it goes for you.
I seem to be needing two injections in my knees each year now as he said I am bone on bone.
It seems to make more sense to have some replacement lubrication.
Look forward to you reporting back. X
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Date: 01.10.2013
From: Patricia

Subject: Re: Fluid replacement?

Will certainly let you know as soon as I have the treatment Emm. I have phoned the rheumatology nurse today and left a message. Really sorry to hear that your knees are so poorly. It is a difficult illness to deal with that's for sure :-( My knees (and ankles and feet) have been badly swollen for three years. My other joints that were affected calmed down after a while with prednisolone. Rheumatologist took an xray at the beginning of September and said my joints are narrowing and then gave me the option of the two injections. He agreed the 'cushioning' ones would be better. I already take systemic steroids and have done for quite a while so didn't think the steroid injections would be of much benefit. Aswell, with the other injections we get a local anaesthetic!!!! Take it easy Emm and take care xx
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Date: 05.12.2013
From: Patricia

Subject: Re: Fluid replacement?

Hi Emm - as promised just letting you know how the synvisc injections went :-) I had them done a couple of weeks ago and I can definitely feel improvement. Less pain and less fluid build up. I still have pain and fluid in both knees but I am much less aware of this now so I would say a good result. Apparently these can be done every six months and i would have them again without hesitation. A local anaesthetic was given to the knee and then the gel was injected (like treacle consistency I was told). There was very little pain with it - just a scratch of the needle initially - no problem at all :-) My knees were really poorly and hurt all the time - I still have the RA so do still have fluid build up and some pain but nowhere near what it was. When I am walking it is easier for me. Hope this helps xx
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Date: 08.12.2013
From: Emm

Subject: Re: Fluid replacement?

Hi Patricia,
I have just seen your post. Thanks for letting me know.

I am so pleased you are having some relief and it must be good to be walking easier.

I see Dr Bridges on the 17th of this month and will mention to him that I have heard of these injections and ask if they are suitable for me.

I am thinking now that I am going to need replacement joints soon. I had an injection in both knees about 3 weeks ago, I have improvement after them but I am getting them more regularly now.

I hope you continue to get even more mobile in the coming weeks.

keep me posted Patricia and Happy Christmas to you and your family. X
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Date: 09.12.2013
From: Patricia

Subject: Re: Fluid replacement?

Goodness Emm think we must live close to each other - do you see Dr Bridges in Darlington Memorial??? I see Dr Reece the other rheumatologist there - he is absolutely brilliant!!! This is some coincidence if you live in the sunny Darlo area LOL!!

This illness is certainly not easy and I hope you too get some relief from the pain in your knees. If it is any help, whilst I was in getting my knee injections I was talking to a lady waiting to get discharged who had just had a knee replacement and was doing so well just four days after the op. She was amazed by her mobility too. I asked her the name of the surgeon and it was Dr Sedaka (she told me to remember Neil Sedaka lol) and she was pleased with his skill - so perhaps something to remember for the future. She said she had been having the gel injections for many years but it came to the point she needed replacement - I was impressed with how well she was doing. Take very great care Emm and enjoy the holidays - family and friends is what it is about - stay close with them....x
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Date: 10.12.2013
From: Emm

Subject: Re: Fluid replacement?

Evening Patricia,

I see Dr Bridges at Bishop Auckland hospital, but have done so at Darlington too.
I am about 12 miles from Darlington. My friend from Barnard Castle sees Dr Reece as he travels to do clinics there.
He does sound very good, she has had good care from him and is off steroids and on a biological, Humira since he took over.
We both used to see Dr Sattar but when he retired he was replaced by the two specialists. I wish I had got Dr Reece as he seems to offer more. May be wrong, I don't know.
Thanks for the info on Dr Sedaka, I will certainly remember the name.
I am there on Tuesday, so am going to take notes with me.
I am not going to my daughters this year in Switzerland because of the problems I have, I just don't feel I can struggle on this year. Hence I want to get sorted to get back to travelling again I have had a terrible year.

I really appreciate your bits of info on injections and about the ladies knee surgery.

Thanks so much. X
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Date: 10.12.2013
From: Patricia

Subject: Re: Fluid replacement?

Hi again Emm :-) I have a feeling you may have explained this to me before and I have forgotten - oops - sorry if I have asked you this previously. Just you mentioning your friend seeing Dr Reece has jogged my memory - i think!! My memory isn't what it once was LOL!!!

Dr Reece is so nice. Extremely easy to talk to and really cares about his patients and yes proactive treatment wise if you want him to be. I opted for the antibiotic protocol (roadback foundation) and he has been kind enough to prescribe for me. Sadly, I am still on steroids and I now have osteoporosis but that isn't his fault it is mine :-( and I was already osteopenic three years ago at the beginning of this awful illness eurgh. Not sure what he will suggest when I go next summer but am going to try to get down on my steroids a bit if I can.

I am so sorry to hear you can't visit your daughter. It is so heartbreaking isn't it?? I have a son in Dorset and new granddaughter and can't visit either so I really do understand - my heart goes out to you. Let's hope Dr Bridges helps you. There is lots of information on the internet about the gel injections and surely it would be worth him giving them a try to see if they helped you. If not then fair enough but at least he should try or give you the reasons why not. You must be in such a lot of pain.

I think you really need to let Dr Bridges know how this is affecting your life - it isn't fair on you - and if there is something that can be done then he must do it. I know we have to be realistic but it truly does sound as though you have had a terrible time and perhaps not enough support with your treatment plan. If you are not happy with the next appointment then could you not change to Dr Reece??

I hope that your appointment goes well and you get some relief and get on that plane again to see your daughter. Now, wouldn't that be something to look forward to.

Do let me know how you get on and take very great care.....x
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Date: 18.12.2013
From: Emm

Subject: Re: Fluid replacement?

Hi Patricia, just reporting back after seeing Dr Bridges yesterday.

He gave me ankle and shoulder jab.

I asked all my questions, he said he hadn't heard of antibiotic protocol, I mentioned a lady on arthritis forum is on it from Dr Reece! Still said he had not heard of it.
Mentioned the filler type injection for my knee and he said my knees are down to bone on bone so it would not help me.

Discussed surgery as I am getting injections so regularly and I mentioned Dr Sudhaka and he said he will refer me to him. So am waiting for appointment.

I asked for maybe trying new medication but he was not keen on that either. So have resigned myself that this is as good as it gets for me.

Finally he is sending me for a bone density test.

I have never wanted surgery but maybe I should try to think in a new way and maybe it will actually make me more mobile again. But don't get me wrong I do all housework and I am out and about almost every day.
It is just that it is so painful and harder to do in my present condition, I do need to get some sort of treatment.

From what you and my friend say about Dr Reece I think it seems he is better at listening and discussing choices.

Thanks for your help and listening. Hope you are doing OK. X
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Date: 19.12.2013
From: Patricia

Subject: Re: Fluid replacement?

Awww Emm I think I have to agree that Dr Reece is extremely good at listening and giving us choices - or 'allowing' us choices that we want to take as long as he doesn't feel it is detrimental to our health. Dr Reece initially prescribed the minocycline for me and now my GP does it. He doesn't necessarily agree with the AP as such but does believe that RA can be started with infection, amongst other things he says, and so was happy to see what the mino did. After all sulfasalazine is an anitibiotic! In my case it has brought my CRP and ESR well down BUT I still do have a lot of pain and swelling. I do think Dr Bridges is more formal in his approach from what I can gather. Not as open to suggestion should we say!!! A good Doc I would think but I am sooooo glad I got referred to Dr Reece.....

I agree that sometimes we have to make choices we don't want to take. The illness sometimes takes hold of us so much sadly. All I can tell you is the lady I spoke to who had the knee replacement spoke very highly of Dr Sudhaka so I sincerely hope you find the same. She showed me her battle scar!! and it was clean and neat and this was only four days after the operation and she was doing well. I know this isn't how you would have planned your life out but sometimes we have to take these decisions to give us a better quality of life NOW.

I am glad you are getting your bone scan done. I had one done three months ago (my second because of steroids) and it is Dr Bridges that looks over them. I think with inflammatory conditions and medications we take these are imperative.

I really do admire you for continuing to get on with your life. I know how hard that will be. I do very little housework these days and go out only a couple of times a week. After that I have had it - so you must have an inner strength that keeps you going - and it can't be easy for you.

I am hopeful that you will get to see your daughter once you have had all your 'procedures' - ooh hate that word really - it used to be when I thought of getting older that I worried about losing my teeth and going grey - pfffffft - we got more than that to worry about haven't we LOL LOL.

2014 could be just the year you get your mobility and life back Emm. Sending you best wishes for just that......x
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Date: 20.12.2013
From: Emm

Subject: Re: Fluid replacement?

Hi Patricia,

Thanks for your good wishes.

I think I have a very slight improvement in my ankle, so suppose it is something.

I will see how it all goes and post to you again with updates.

Hope all is as well as it can be with you at present.

Take care. X
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Date: 07.12.2014
From: burba

Subject: Re: Fluid replacement?

Hi Emm,
Please let us know how you are now. I am in a similar situation, considering a knee replacement.
Best,
burba
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