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Rank: Advanced Member  Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi all
I have still not spoken to rheumy nurse about hair loss. I have taken it on myself to increase folic acid from 1 to 4 a week but have just had a thought! could it be that I have changed from inj to tabs? I came off injs because I was having very light headed 'dos' which I blamed on them. My GP...bless her!.... told me she thought I had had a mini stroke. She scared the living daylights out of me it's a wonder I didn't have a major one. Consultant said it was nothing like a stroke and was prob due to the beta blockers I had been taking for 20 years for migraine because they make your blood pressure low so I decided to come off them, gradually of course. I have been off them for 2 months now and haven't had another 'do'. I would be grateful for any views on going back on injs to avoid the hairloss. I must add that when I was on injs I was much better and had no other probs with them. Has anyone else had fainting 'things' on injs. Rheumy said thay had never heard of that as a side effect before. I really hope no one else has so I can go back on injs
Sorry for the epic but getting desparate. I don't want to be bald for my son's wedding next year.
Regards
Sheila G x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Sheila
I have taken mtx tablets and injections, definitely more hair loss with the tablets.. I didnt notice too many side effects with the injections just extreme tiredness which meant for two days a week I was totally out of it! Rheumy said maybe injections were too toxic for me so back on the tablets, unfortunately all these drugs have side effects and everyones different, sounds like injections will be fine for you hope things go well Love Ceri x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Thanks Ceri
Think I will try injs again. Will speak to rheumy nurse this week, if I can get hold of her.
Sheila G x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi all
I am feeling quite down in the dumps today. I could cry at the drop of a hat. I have eventually spoken to rheumy nurse about hair loss. She said as I take thyroxin as well it may need increasing but had a call from my GP also today saying my Thyroxin level was high and have to reduce by 25 mcg. I told nurse this and she has told me not to take mtx for 2 weeks to see if improvement. Either way she thinks I may have to reduce mtx and take another drug as well. After 9 years I am still scared of trying new drugs. Any advice would be most welcome.
Sheila G x
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Oh no sorry to hear you so down. It is daunting trying new drugs again
I know it has happenned to me on many ocassions.
We need to listen though if things not good we have to try a different
method. Don't worry
Rose
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sheila Sorry to hear things are not too good but by the time you read this it will be another day and hopefully a brighter one for you. I feel as though I have spent the last 23 years trying new meds (although I did have a really good 7 years in the middle)! It does make you despair at times as they all take so long to begin to work, or fail! I'm waiting for a new drug regime to be rolled out and suspect it isn't going to be quite what I would like. But heyho ... we live, we learn. You may find a lower dose of methotrexate with an additional DMARD added in actually works better for you (and less hair thinning too!). So perhaps this could be a positive step, fingers crossed  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Sheila
Sorry to hear you are having so many probs at present.
I do agree with Lyn that a lower dose of mtx plus another dmard could well be the way forward for you.
Let us know how you get on.
Love Jeanxxxx
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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 Hi Rose, Lyn and Jean. Thanks for the advice. I am so pleased that you think lower mtx and another dmard may help because I think that is probably where it is going. I came off hydroxy because I was frightened by the eye problem, which apparently was nothing to do with it so might ask to give that another go I did very well on 15mg mtx and hydroxy but I will wait and see what they suggest. Thanks again for all your help. You have really made me feel better. Much brighter today but very sore and stiff. Sheila G x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sheila Glad your mood is brighter, feeling more upbeat does help with the pain etc. Things will improve so no despairing Usually on Hydroxy you do need to have regular 12 monthly eye checks; but I wouldn't be too concerned by that. It is known to have a side effect of visual problems but it's just like any other drug, they all have some problems we need to be aware of. Good luck Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 3/28/2011 Posts: 956 Location: North Preston
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Hi Lyn Thanks for your reply. I came off hydroxychloroquine sulphate because I was having flashes in my eye but docs and opticians assured me it was nothing to do with the drug. I was scared so stopped it but may have been too hasty. Rheumy nurse has told me to stop mtx for 2 weeks to see if hair loss is any less. May have to reduce dose and try another so may go back on hs. Sorry if I have repeated myself. I don't know where my head is right now. Lovely to talk to you Sheila G x
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