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Pollianna
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Hi guys, got some nice news for a change :p

Saw my GP for the fist time since my diagnosis. He said hello "you've cut yr hair" :lol:

So he remarks that the whole situation is interesting. I said I knew there was desease process going on, I just knew. He was ok with me saying that and to be honest I felt in the absense of any form of contrition for not really believing me I had a right to say it though am so soft I feel ungracious now. I did ask him if he would look after me and he laughed at the childlike way I said it but it was an empathetic laugh tho he looked a bit more than worried at the prospect.

I requested to double the Plaq at the 6 month mark if I was still in such pain. He said that 14 months was too long to wait to see Dr D'Cruz and that he didn't want to rock the boat visa vie my immunosuppressant treatment. He is writing to them to ask them to see me sooner. I am flaring badly tho the Plaq is doing some good. I will be happy to suffer till I get there though.

He wrote a name down and asked me if I might consider taking it. ( he knows I am too fussy about drugs and scrutinise everything he prescribes then hand it back )

GABAPENTIN for nerve pain. needless to say have researched it and no thankyou I won't be getting myself all addicted to that :rolleyes: I would rather suffer But how cool is it that he even asks me? most just give stuff and expect you to take it.

So, I am on me tod with this illness as far as he's concerned but he's making so much effort on my behalf I am happy. I told him how lovely the genetic dermatologist was and showed him how the cream he gave m is dissolving my little rough hands. He did say he was pleased that I was reciving such good care in London. He has given me loads of stuff on script and really what more can I ask for. ;)

Ok, so I could request a few weeks vacation on Maui with Maddona's toyboy but that aint gonna happen :lol:
 

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Hi there :)

It's good to hear that you had a positive appointment and to hear you a lot happier than I have in ages!!!

Just a note on gabapentin. A lot of people here do take it and obviously, although such decisions are never taken lightly, it might be something that you have to reconsider at some stage. If you feel you can manage fine now then that's great but don't be too hasty when the GP mentions things, some can make a huge difference to quality of life if they are the right med at the right time.

Katharine
 

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Hiya Pollianna, good news indeed, it is such a relief to have people working alongside you rather than against you! I could do with some hand cream like that my hands are like billy goat gruffs!!!:lol: oh he had hooves but you know what I mean!!
Claire X
 

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Pollianna
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Discussion Starter #4
Katharine;545698 said:
Just a note on gabapentin. A lot of people here do take it and obviously, although such decisions are never taken lightly, it might be something that you have to reconsider at some stage.

Katharine
I understand katherine. I had no idea who used this drug as it came up as a treatment for so many ailments. I meant no disrespect to anyone who takes this drug. I realsise peole take many drugs and can tolerate them well. Although I am suffering I am so wary of all meds because I have such a low drug tolerance and get every side effect possible that it's easier in the long run for me to struggle through...

Gosh i used drug a lot in that paragraph :lol:
 

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Hi pollianna,

I'm glad you had such a good visit with your GP.

About gabapentin: I was prescribed gabapentin and my reaction was exactly the same as yours and for all the same reasons. But, I kept the script and one day two weeks later when in so much pain I didn't care what happened, I filled the prescription and started taking one 300 mg tab at night before bed. All went well, no side effects, less pain and better sleep. Four days later I started taking two 300 mg tab, one at 9 am, one at 9 pm. Had some minor side effects after the morning dose for a brief while (drunken/drugged feeling), then no side effects and less pain. I have kept at this dose for a month until today when I added another 300 mg tab at 3 pm, per prescription instructions, to see if it helps more. If not, I'll stay at two tabs per day. If you follow dosage instructions and listen to your body, I don't think there's any chance of dependence.

Barb
 

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You mention addiction when talking about Gabapentin...........not sure I've heard that mentioned before?

Anyway a lot of us are on it for nerve damage done during flares. It's always an option for you if you need it later ;) It does need to be introduced slowly and the dose titrated up. Same if you had to go off it I guess, however that's not addiction problems going off, it's common sense with any of the drugs that work on the CNS. They should never be stopped suddenly.

Glad your GP is on the same page as you, that's a bonus always!

love
Lily
 

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Hi Polliana

First of all i have to comment on the trip to Muaii:rotfl:and maddonas boy toy:lol:.If he can give you a script for that let me know i would love that also for my health of course:rotfl:.I also am very glad your gp does listen to you as that is very helpful and a piece of mind also.I am not sure about the drug he mentioned to you but you are right evryone is differant.What works for one does not always work for another for sure.Goodluck with getting your pain under control.

Tammy
 

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:woohoo:pollianna,

Glad you have a great, understanding & helpful doctor.:)

Good luck with your meds.
Love,
Lyn
 

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GABAPENTIN for nerve pain. needless to say have researched it and no thankyou I won't be getting myself all addicted to that I would rather suffer But how cool is it that he even asks me? most just give stuff and expect you to take it.
I take neurontin for migraines. I battled one migraine which lasted 4 1/2 months. I take neurontin with a couple other drugs to make a "cocktail" which is what we have found is able to control the migranous giganticus. I also have peripheral neuropathy in both legs, feet, arms and hands. This has been helped with the neurontin as well.

Please don't be quick to judge drugs that have a wide range of benefit. If the drug helps to get through the day a bit easier, pain free or reduced, brain functioning a bit more, then it is worth giving it a try and taking. ANY medication taken for a long time will cause the body to adjust to having the medication and ceasing to take the drug will generally cause the body to show some reaction when it is no longer there.

For me, neurontin has enabled me to rejoin the world of living. I don't know if I could go thru again what I did. I most certainly would not do it willingly. Instead, I am thankful that neurontin and other drugs are available to let us work through each day in as little pain or discomfort as possible.

If I sound harsh, I apologize, just please don't blatantly denounce something which has given life back to many of us.
Sally
 

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Polliana,

Does sound like a good GP visit.

Re. meds, most important thing to me is quality of life so that I can operate and join in with family and social things without much pain and other symptoms. Dependancy upon drugs is very different to addiction. I would rather be dependant on meds than dependant on pain!

Rather than try and speed up an appointment with Dr Cruz, it would be a good idea to seek a local Rhuemi or Immunologist that will cover you care inbetween the St Thoms appts. This is the system that works well for me!

Take care!
 

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Pollianna
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Discussion Starter #11
Sally I did say in my post that I am only denouncing it for me. I know everyone is different and some find relief in it there's no offence intended. I'm not asking you not to take it.... I have had terrible side effects from drug doled out to me by GP's willy nilly and my scepticism is well earned. I think I have every right to say how I feel on here don't I? :unsure:
 

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Pollianna
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Discussion Starter #12
Thnks lesley but theres no rheumy here who can look after me. The quality of care in my City truly is appaling. We come out top of the list on worst hospitals all the time. My Gp doesn't even want me to see a rheumy here. I know someone on here who went to one in my City who missed her illness and she ended up paying to get to London .

I am waiting to either get an appt in London or Dr D'Cruz will instruct my GP to increase my Plaq at the six month mark which I don't mind at all.

I'm pretty ok with the review in general

Thanks for yr replies guys, much appreciated.
 

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Hi, I know you say the Rhuemi's are not up to much, but what about an Imunologist!

I get treated by a local immunologist for lupus and he's great....cant say same about the rhuemi i used to see!
 

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Pollianna
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Discussion Starter #14
OOOOh an immunologist sounds interesting. I will try tho I think my GP would have a pink fit if I asked to see one of those.
To date I have seen two orthopeadic surgeons, one lung specialist, one neurologist, eye specialist, throat surgeon, thyroid chap. Pain management expert and the rheumis at St Thomas's. The GP might think am some kinda weirdo consultant tourist :lol:
 

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The Other Illinois Tammy
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pollianna,
That is wonderful news, it is not often that you findly get in their heads. You got in that doctors and you are right they give you a script and think you will just take it. My doctors know me well enough to ask me also lol, and yes it is so cool. Every now and then mine forget and get ahead of themselves and I have to be the reminder yet again lol. I hope that you keep having that wonderful relationship with your doctor.
 
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