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Rank: Newbie
Groups: Registered
Joined: 12/4/2009
Posts: 3
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Sorry have not been on here for soooo long, but would like some help please. I had been on Methotrexate 10 mgs. and Hydroxy. and when I saw my Rheumy last he stopped my Hydrox. and put me up to 15mg but it affected my white blood count, so my Doctor told me to stop my Metho' this was beginning of December and she said she would contact my Rheumy. Have been having bloodtests and my blood count has been steadily going up. My Doctor has not heard from Rheumy, typical! So Doctor is going to write to my Rheumy again, but said it would be an idea to contact him myself aswell. I am feeling being off medication and now back to square one with pain etc: When I contact the Hospital do I ask for Rheumatologist or his secretary? I have not contacted him before. Hoping someone can help.
Thanks.
Dollie
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Dollie,
sorry to hear you're struggling .. am not surprised if your meds have stopped.
i have a direct number for my Rheumy Nurse ... we have two who work part time, and i always get to speak to one within 24 hours if they are not available there and then.
they can also make decisions about the meds, as i rang just before Christmas as my Methotrexate isn't working, i am also on Hydroxy for the past month and have to give these two drugs a chance to work together for 3 months before review.
anyway i have been convinced that the Methotrexate affects my sleep ( they know this as well as the Consultant ) and my Rheumy Nurse when i phoned her said i could cut the Methotrexate from 20mg to 15mg, as i can recall my sleep wasn't so good when i upped it to 20mg ... so i have reduced it this week.
my GP has no say over my RA Drugs, but of course checks my blood results as i have them done.
i would definately contact your Rheumy Department ... i went to an NRAS meeting at my Hospital last September and i was so impressed the whole Department had given up their evening as well as the Consultant to be there, they are very open to helping the Patients and the NRAS Co-Ordinator said we were very lucky with our Department.
don't suffer in silence it's you that needs help.
hope this info helps in how my Rheumy Clinic works.
let us know how you get on,
Suzanne x
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Dollie
I'm on mtx and hydroxy. Every time I try to increase my mtx dose to 10 my white count drops but all I've ever had to do is drop back to 7.5 and then the white count goes back up. It seems odd that you were told to stop altogether and then to be left for so long with nothing. Do you have a rheumy nurse you can call? I really think you need to contact either her or your consultant and get some advice. Letters can take several weeks to process if my hospital is anything to go by so phone calls - and possibly a fairly forceful one at that- would be my way forward.
Good luck
Sue
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Rank: Newbie
Groups: Registered
Joined: 12/4/2009
Posts: 3
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I will I think phone the Hospital and ask to speak to his Secretary. I do not think that the nurse will be able to help with this one. It is a headache to get the right meds, I seem to be okay on the 10mg Methotrexate, but above this there is problems. Being with no medication has put me well back and feel awful. Will post to let you know how I get on. Thanks.
Dollie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Dollie, I think it`s a good idea to ring the hospital and get the problem sorted. Where I go, we are given the phone number for the rheumy nurse, and also for the consultant`s secretary.If you ring the sec, she should be able to get things moving for you. Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/21/2009
Posts: 106
Location: cornwall
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hi Dollie
ask for consultant secretary
i always do this as very often consultant is in a clinic and is the easiest way --if he/she has a good secretary of getting messages thru
i agree letters can take weeks to get thru--the other alternative--very old fashioned--is to fax a letter direct to secretary --the mainswir=tchboard should be able to give you this number
hope you can get sorted very soon
gentle hugs
caz xx
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Rank: Newbie
Groups: Registered
Joined: 12/4/2009
Posts: 3
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Well I managed to get to speak with his secretary and he has only received my notes plus letter (sent on 8th December) Must have been sent snail pace? So he will only see letter on Monday. So will have to wait and I will not be far wrong that I probably will not hear for a while. I hope I can last out. I am not sleeping too well and feel as if I am going about in a daze my joints are so sore in an evening, when I sit and relax. I am sure I will survive.
Dollie
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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If I were you, Dollie, I would pester the secretary if I (or my GP) hadn't heard by the middle of next week. I KNOW you shouldn't have to, but it's your quality of life being affected here, not the consultants xx
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Dollie,
I agree with what everyone else has said, unfortunately many of us on here have to be pro active.
Thinking of you.
Anne x
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi Dollie, When I was having a flare once I went up to the rheumy dept and asked to speak to the rheumy nurse. I had to wait a bit but I did see her and she also fetched out the consultant to see me too. Direct action can be effective sometimes. We all try not to make a fuss but sometimes we just have to. Don't wait too long. We know they are busy but you are in pain.
Hugs
Sue
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Dollie
Sorry you are in a bad way . I don't think I can add much more
than those before me have said.
Definately get the RA nurse involved as they do have 'power' and if they
can't recommend anything they certainly will talk with the Specialist.
I may be possible to have a steriod injection and that will help with
your mobility
Good luck
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 89
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Hi Dollie, hope things soon get moving for you.
My rheumy nurse gave me her contact number right at the beginning of my treatment.
I've found the best way to contact her is to leave a message on her answer phone either in the evening or early in the morning.
That way she picks up the message as she starts work and gets back to me that day.
Hope you get some action very soon. Take care, Kathleen x
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