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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Had my bp check today, first time since taking the 20mg dose. I went straight from school and was so disappointed ... BP has gone from130/65 to 145/90. The practice nurse at GP just told me to contact the rheumy nurse and let her know, so I will ring and no doubt have to leave a message tomorrow. Anyone know if my BP reading is too high, or too high to stay on this dose? I really don't want to stop as I feel so much better on leflunomide. The half dose didn't seem to do much to help. Rose - did you get your BP down enough to start on Lef.? And is it possible to stay on the treatment but also take BP meds to bring it down? Sorry for all the questions  XX Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 59
Location: North Bucks
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Hello
Hope you dont mind me answering you, l too take Leflunomide and now have high blood pressure.
My blood pressure was consistently above 90 or 100 on the lower reading but after trying various BP meds its now below 90 and usually below 80, the upper reading was between 150 - 180 and is now at around 130.
My BP last week was 130/76, when l spoke to my Rheumatologist she was happy for me to carry on with the Leflunomide and have regular BP checks, l normally have it done with my monthly blood tests. I did, and still do, have the occasional hiccup with my BP readings but it just usually needs an eye kept on or a tweak of meds.
Like you l would hate to stop the Leflunomide as it has made me feel far better than any other RA meds, l hope this helps and that you can get effective treatment for your BP.
Best of luck
Christine xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Ailsa. Yes I got started on lefln eventually when my BP was 147 / 92 - but unfortunately I was only on them for 5 weeks as they pushed the BP up again and gave me severe headaches (even with 2 BP tablets which were benzo and amlodipine. ) so now not on any DMARD as the Specialist been on a holiday for 4 weeks. My GP stopped last week the amlodipine and been replaced with Ramipril. my BP 2 days ago was 148 / 97 - so still too high when I am on BP drugs. I would think Ailsa yours is not too bad, and if lefln is working for you they will start you, if appropriate, on a BP tablet. You can be on BP tablets and Lefln at the same time. Good luck and let me know how you get on. Me well I am still waiting . . . . . Rose 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Ailsa
Sorry to hear you are suffering from high blood pressure on Sulphasalazine. The same happened with me and I had never had high blood pressure before. They put me on blood pressure tablets (Ramipril) which really lowered my blood pressure (too low at one point) but then I had to eventually give up the Sulphasalazine due to very bad headaches. I had my blood pressure taken about a month ago and it was 103/70 and I was advised to stop the blood pressure tablets for a month. I had my blood pressure taken at the doctors on Monday and it was 137/90. My GP said the 90 was borderline for someone with RA but nothing to worry about and to have my blood pressure checked in a year's time.
Hope you get yours sorted.
Jackie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 714
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Sorry Ailsa Meant leflumonide not sulphasalazine (so many medications tried  ) Jackie xx
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Rank: Advanced Member
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Joined: 3/4/2010
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Well, it has gone up again to 147/97. Is this nearly boiling point?!! The headaches are still bad too  XX Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Ailsa had mi8ne done today 154 / 97 .
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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The Rheumy nurse left a message for me to stop the leflunomide and get another bp reading next week. I'm so diappointed. Since taking the 20mg dose of Leflunomide for the past month, my ESR has come down 40 odd points to 87 and I feel so much better, apart from the awful headaches (about 2-3 a week)
Rose, sorry to hear you are way up high too. Are you on treatment for the high BP?Did you start Leflunomide and have to come off? And what is the next step for treating the RA if you have failed on L too? (Sorry for all the questions!) I don't have an appointment with the consultant till mid October.
I'm really worried how i will manage at work if I have to stay off Leflunomide. Our school has been making massive cost cutting decisions, which means I have I have a very full timetable of very large classes. I also help care for my parents (both unwell and in their 80s) plus the house and teens stuff too. Can we be given meds to lower BP then stay on Leflunomide, of=r does it not work like that? XX Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Ailsa, Poor you I soo know how you feel. I am sorry that you had to stop for a week. I had to do exactly the same a few months ago due to really bad heads and high BP Refer above to my post on the 7th - yes I am on 2 BP tablets and you can be on them and be on leflun at the same time. I am still waiting for a Spec appoint she has been away and came back last week . I waited for the post today still no news so rang and spoke to a stand in secretary who promised she would look into it and ring me back. I rang again at 4.45 and it was an answer phone grr. I feel quite let down at the moment so I hope your Specialist gives you more help. My RA nurse says she cannot do anything else for me until the Spec sees me and recommends what next. I am in pain, take lots of pain killers my hands fingers all very sore . I understand if 2 DMARDS do not work you may get referred to Anti TNF (I am sero neg RA so not sure .) Try keep spirits up I am with you all the way Rose
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Thanks ro replying Rose. It helps so much to know there is someone else who is at the same point. Hope you get your appointment soon - it is so frustrating when people promise to call back and don't do it. Definitely doesn't help with the BP!
Sorry for repeating questions - I looked for your previous posts on Leflunomide and BP but couldn't find it. Have a good day everyone XX Ailsa
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Rank: Advanced Member
Groups: Registered
Joined: 8/26/2010
Posts: 30
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Hi Rose and Ailsa
My name is Dawn and I have been reading your thread and thought it best to comment firstly to Ailsa, I saw my rhemmy nurse today as I have been put on lefludamide today after being on meth for a long time and not having worked. My rhemmy nurse said that you really need to be careful with bp and also report issues with it promtly!!! hardly any good when you are always kept waiting for appts or someome to help you understand the results.
Rose, I do sympathise with you as you know from your replys to my threads I have had a long journey with dealing with rhemmy appts and playing the bloody long waiting game!!! Its taken over 10 weeks to eventually have my appt today to have new meds. I think by the sound of things that rhemmy appts and getting great advice might be hard to come by in rhemmy clinics its a good job we have NRAS to support us. I do hope you get sorted quickly as I do know what you are going through and I am still feeling the effects now after waiting sooooooo long. I am going to write a long letter to my local hossie regarding the way in which I feel that the rhemmy dept have been with me and my experience. I am not sure if it will do any good but at least I tried.
I do hope you both get sorted soon, keep your chins up xx
Take care
Dawn xx
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Rank: Advanced Member
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Joined: 3/4/2010
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Hi - thanks Dawn and good luck with both the letter and the leflunomide! Let us know how you get on xX Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Dawn
Thanks for your advice - I am still waiting - see on other post, but soo exasperating isn't ?
Hello Ailsa,
You also like me in limbo same problems high BP and off the Leflun, but I have been
waiting for my next stage since mid july but due to hols RA nurse, RA Specialist etc.
they have back log. I have been told that she will try and fit me in end of a clinic
first week in Oct. No news of a date yet though.
Rose x
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Rank: Newbie
Groups: Registered
Joined: 9/12/2010
Posts: 1
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Hi All,
I'm new here, but started Lefl last week, after coming off the Metho and Suplha mix that wasn't working.
Have been diagnosed for just over 2 years, and am struggling to keep all the balls in the air.
I'd gone onto the methotrexate injections over the summer, as the tablets weren't working, but felt lousy, couldn't function with the side effects.
I work full time, but have noticed I am strugggling more since the summer,I have a meeting this week to discuss hours, at my request.
So kind of hope this one works but have raised bP already, so will see.
How long did it take for you to see any improvmenets on Lefl meds?
Your mesages are a great help in a rainy day,
Maz
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hi Maz - I noticed a difference after 4 weeks. We were on holiday and over the course of the week I could walk further, keep going longer and was less stiff. The last couple of days I managed 4-5 miles each day!
On the doubled dose I had in August (20mg) I was able to get loads done in the house. I'm so disappointed to me off it with HBP. I still take hydroxy and amitriptyline plus tramacet but the pains are already back in force having been off it for 2.5 weeks. I see the rheumatologist on 11/10 so will see what happens next.
Reallyy hope it works well for you and doesn't cause too high BP XX Ailsa
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Rank: Advanced Member Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Maz and welcome
I am cross reference your post on to New Member - perhaps you would like to post on that section
so everyone can answer you.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 364 Location: mid glamorgan
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Hi Maz
Im Ceri and was diagnosed about 15 mnths ago, I inject mtx but like you feel totally wiped out with the side effects! I hope lef works for you and your employers are sympathetic to you (mine arent) take care and hope your bp comes down! xx
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