Humira and Tendonitis Update and anyone want to share experiences of Lyrica?

[Lisazs]

Hi, so in an update to my query between coming off Humira and then experiencing widespread Tendonitis I have today seen my GP and arranged to see my rheumatologist nurse on Friday. It turns out to be just as well I phoned the Rheumatology helpline again as although they had requested a consultant appointment for me after my last phone call three weeks ago it still could have been a twelve month wait! GP has given me a prescription for Lyrica 75mg as I've got other issues flaring up too - Costochondritis and various spine issues. So anyway thanks to everyone who responded last week, I'd allowed myself to go into plodding on with it mode which is never a good thing! Sometime forget just how much we have to take charge and self advocate in terms of out health care and not let the exhaustion and frustration rule!

[weathervane]

I have sjogrens and i have been taking lyrica for over a year now for muscle pain. I was advised to start it very gradually on 25mg and increase slowly until i find right level . I found that 100mg twice a day works for me . Iwas lucky not to have had any side effects , but initially when I started I avoided driving incase it made me drowsy- i was fine . I hope you get things under control , best wishes 🌸🌸

[Lisazs in reply to weathervane]

Thanks weathervane, thinking the 75mg twice a day start that the gp advised my be a bit too heavy then. Think I'll try them just one tablet late evening for a while to ease into them! Getting nervous of new medication these days, had several in past 18 months that have had side effects worse than the conditions they're supposed to treat!

[weathervane in reply to Lisazs]

I hope all goes well , you could have a chat with the pharmacist as well as they give great advice xx

[nomoreheels]

Like weathervane my GP started me on Lyrica on a low dose, 25mg x 2 daily. This was in Nov last year & I've had monthly reviews with her letting me take the lead titring up the dose. I got to 125mg & felt I'd like to stay there another month but the following month it was increased to 150mg. I wasn't totally happy on that, my h picked up on a few things that I wasn't happy about, cognitive problems & just not quite me, so last month I went back to 125mg x 2. I see her again in a week's time & intend telling her I'm happy staying on this dose.

It is a med that divides people. My h hates it having had a bad experience with it & we have had words I'll not lie but it's me not him taking it & it's working well so whilever it's helping I'll stay on it. I'd previously tried gabapentin which did nothing for me so I'm pleased I've persevered to what I feel is the optimum dose for me.

If you're not happy starting on 75mg, particularly if you're sensitive to some meds, I'd ask you GP if you could try lowering the dose & increasing it gently. Some GP's can be a bit blasé with starting doses, particularly with meds that are prescribed at quite high doses, Lyrica being one such.

[Lisazs]

Thanks for sharing your experiences. Going to try one Wednesday night and go from there, do my methotrexate injection tonight which does leave me feeling rough for about 45hrs so figured best to wait for first trial on Wednesday and if nothing too yucky happens repeat on Thursday night prior to my Rheumatology nurse appt. on Friday.

[nomoreheels in reply to Lisazs]

I think that's best Lisa, go gently & see how you react. Just wondering are you taking enough folic acid? Two days feeling rough after injecting MTX must be disruptive.

[Lisazs in reply to nomoreheels]

Rheumatologist actually told me to take it everyday even methotrexate day so I do. Had a trial period without mtx last year but my joints didn't like it and the trial of leflunomide as a replacement was a disaster! I've been on it for most of the twelve years since I was diagnosed and the thing that makes me stick with it now is that it does seem to be stopping erosion (at least in my hands not been scanned elsewhere) but yes it is really disruptive, some weeks are worse than others but I've not been able to determine why. Made sure I had lots of ginger yesterday and only had few yucky moments so far today so hoping it's a good week!

[nomoreheels in reply to Lisazs]

Fingers crossed it is a good week for you. Have they tried reducing your dose a tad, as little as 2.5mg less can make a difference between my LFT's being ok & not so thinking if you could go down a dose, lessen your two yucky days yet still be controlled?

[Lisazs in reply to nomoreheels]

So far not feeling too awful today (phew) but no to the reduction, we've tried it several times over past few years during periods when joints have been behaving but it doesn't take too many weeks before joints react. I was actually asked to consider an increase in dose last year - needless to say I chose not to! Having tried some of the alternatives out there mtx is kind of the lesser evil on the side effect front, if I find out any of my joints are eroding then my attitude to putting up with the yuckiness will of course be quite different! Hope you have a good week too x

[Someonesmother]

It was evil for me I will never touch it again. Same for a few people I know. Read lots before you commit to taking it as it is very very hard to come off once you go on it. If anything feels strange or not right go straight to your Dr and do not hesitate as the effects can be serious as in my case.

[Lisazs in reply to Someonesmother]

Thank you x

[Jacey15]

I have 50mg am and 150mg pm for neuropathic pain. Its fabulous as I have had a 95% reduction in neuropathic pain. The biggest side effect is dizziness for me so thats why my dose is loaded to the evening. Good luck.