Guest guest Posted October 16, 2001 Report Share Posted October 16, 2001 Dear Pam, I read your email, and I feel really worried about Bev. The meds may have different name in UK but in my experience they use the same things. I have to go privately when I am in England because as I am not living there I can't make appointments in a month. But the docs I have seen agree that my treatment is good, and are happy to give me the prescriptions. Tell Bev she needs to go back to the doctor and INSISTS she gets a second opinion from a rheumatologist. However the medications do tend to ake you sick, sometimes you have to persevere. There is no magic bullet. The main one is prednisolone (or prednisone) However when you take methotrexate also, people are usually able to cut down on the pred, as high doses for long term are not good for you. Another one is plaquenil, which I am also taking. Sometimes you have to take them for several months before you know whether they are working or not. Some of the problem is that the docs in the NHS are so overworked they just don't have time to do the detective work for people with rare diseases. I know how much pain I used to have, and how much better I feel now (not that I feel perfect, but I function most of the time!!) Please try and persuade her to go back to the docs and try again with the meds. (Keep the antidepressants, though, they do help - there is nothing more depressing than being chronically ill!) Perhaps Anne might have some input. Tell Bev you are both in my prayers, and I hope she finds some help soon. Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2001 Report Share Posted October 16, 2001 Dear Pam, I read your email, and I feel really worried about Bev. The meds may have different name in UK but in my experience they use the same things. I have to go privately when I am in England because as I am not living there I can't make appointments in a month. But the docs I have seen agree that my treatment is good, and are happy to give me the prescriptions. Tell Bev she needs to go back to the doctor and INSISTS she gets a second opinion from a rheumatologist. However the medications do tend to ake you sick, sometimes you have to persevere. There is no magic bullet. The main one is prednisolone (or prednisone) However when you take methotrexate also, people are usually able to cut down on the pred, as high doses for long term are not good for you. Another one is plaquenil, which I am also taking. Sometimes you have to take them for several months before you know whether they are working or not. Some of the problem is that the docs in the NHS are so overworked they just don't have time to do the detective work for people with rare diseases. I know how much pain I used to have, and how much better I feel now (not that I feel perfect, but I function most of the time!!) Please try and persuade her to go back to the docs and try again with the meds. (Keep the antidepressants, though, they do help - there is nothing more depressing than being chronically ill!) Perhaps Anne might have some input. Tell Bev you are both in my prayers, and I hope she finds some help soon. Love Liz __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2001 Report Share Posted November 8, 2001 Pam, I know I really like you now! You really have a sense of humor and you must really have fun with everyone. Bev is so lucky to have a friend like you! There are alot of words I can't spell and I am so glad that I have spell check on my computer. Tell Bev I am thinking of her and hope she gets to feeling. Give her a hug for me. Lots of Love Glender hi got it right this time ??? its not that i cull glender the thing is im discxxxxxxx [cant spell that stupid word ] please tell my WHY do they give it a name that the people who have it don,t have a hope in hells chance of ever spelling it [thank god for spell check] bevs not to good today hubby's bin she's in bed she went to the vet,s to have her polecats seen to [the man with the big scissors ] when they got there the vet was bissy so now she has to wait she has 4 polecats [which i will tell you she keeps in the house] 2 mail and 2 female there names are sugar and spice , nipper and gripper the last two have the right names when they nip and grip you cant get then off don't know if i told you bev has an aptment at sheffield hospital next month the 18th so hopefully they well start to sort her out well got to go as im in work tonight and have to sort tea out for the hubby and 2 sprogs them off to work for a good windup night with my resies [we have a love /hate relationship they love to hate me bye for now luv pam /bev ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.295 / Virus Database: 159 - Release Date: 11/1/2001 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2001 Report Share Posted November 8, 2001 Pam, I know I really like you now! You really have a sense of humor and you must really have fun with everyone. Bev is so lucky to have a friend like you! There are alot of words I can't spell and I am so glad that I have spell check on my computer. Tell Bev I am thinking of her and hope she gets to feeling. Give her a hug for me. Lots of Love Glender hi got it right this time ??? its not that i cull glender the thing is im discxxxxxxx [cant spell that stupid word ] please tell my WHY do they give it a name that the people who have it don,t have a hope in hells chance of ever spelling it [thank god for spell check] bevs not to good today hubby's bin she's in bed she went to the vet,s to have her polecats seen to [the man with the big scissors ] when they got there the vet was bissy so now she has to wait she has 4 polecats [which i will tell you she keeps in the house] 2 mail and 2 female there names are sugar and spice , nipper and gripper the last two have the right names when they nip and grip you cant get then off don't know if i told you bev has an aptment at sheffield hospital next month the 18th so hopefully they well start to sort her out well got to go as im in work tonight and have to sort tea out for the hubby and 2 sprogs them off to work for a good windup night with my resies [we have a love /hate relationship they love to hate me bye for now luv pam /bev ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.295 / Virus Database: 159 - Release Date: 11/1/2001 Quote Link to comment Share on other sites More sharing options...
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