I have recently been diagnosed with SLE, just started hydroxy 5 days ago and i am getting the most horrendous headaches, is this normal?

[jani4063]

[collette]

Hi jani I have been on this medication for just over a month and had a few headaches but nothing too bad. I have just researched the side effects and it does say it can cause headaches, but to be on the safe side speak with your GP about your headaches. Just for peace of mind. Sorry couldn't be anymore help.

[jani4063]

Hi Collette, thanks for the response....its difficult to know what is down to the condition and what can be attributed to the medication, and if i go to my gp with anything the standard answer is "best to speak to your rheumatologists"

I feel like i'm between a rock and a hard place with this condition

Jani

[collette]

I agree with you there, not sure what it is like for you but I have to wait months and months before I can get an appointment with my rheumatologist so asking his opinion is very difficult when the problem is happening right now. I have read on here that some people have access to rheumy nurses. Do you?. Unfortunately I haven't been formally diagnosed yet and am being treated for RA or Lupus. so have joined both groups. Hopefully when I do go back to see the rheumy I have a few more answers.

[jani4063]

Hi Collettee,

I was originally diagnosed with promary sjogrens, them rheumatoid, and now after numerous blood test which have now shown positive ana, as well as dsDNA which is apparently pretty specific for lupus they are now saying I have sle...but it has taken forever to reach this diagnosis. I do have rheumy nurses but i am not impressed with them, I was there the other week for education regarding my hydroxy meds and have just received a copy of a letter sent to my gp regarding this visit, saying I was given lupus booklets and hydrox info booklets and also an eye test........., none of which happened my husband could not believe ,ashe went to appointment with me and all that happened was she discussed that i need to go back on methatrexate which i was really ill with the last time....i think half of these clinics are for box ticking purposes....I work in the nhs as a radiographer and some of the nurses have not got a clue, you ask them something specific and the waffle on as they obviously dont know anything other than quoting verbatim the effects of gertain meds.

I was classed as having RA for the last 2 years and it has only been the last couple of months this has been changed to SLE...but this is mainly because it takes so long to get appointments with the consultant, I have lost all faith in my hospital, and feel I am coping with this on my own

[Hidden in reply to jani4063]

Jan,,too many of us are feeling let down by our doctors,,hospitals,,not getting proper answers and past fron pillow to post!!!We are stronger in numbers as we found,,we created a group here at Facebook,,we are called Lupus is real!! A warm,caring,friendly bunch of Lupies who look out for each other and support each other!!Look us up !!

[jani4063 in reply to Hidden]

Hi Dawn,

Thanks for your reply, its nice to just talk to people who understand what you are going through....I think some of the consultants should access this website to find out what it is like to have lupus on a day to day basis, and also how scarey it is to have to take meds which could make you worse than you already are. I'm not on facebook unfortunately but this site is really helping

Take care

Jani

[collette]

Oh dear, looks like i have a long wait then. I think that is the main problem with getting an actual diagnosis the waiting around for appointments. Not knowing makes you feel like your living in limbo. I think i would cope much better if I knew exactly what was wrong with me.

[jani4063]

i know just what you mean, i've also found when you do eventually get to see your consultant they expect you to just accept what they say, i think if you have an opinion they look at you as though you have two heads, what have your symptoms been?

[mouth22]

I was on hdro and I never got headaches but I had a reaction to it where my lip swelled up and now I am on mycophenalate see if u can be put on that if they think it is the hdro thats causing your headaches xx

[jani4063 in reply to mouth22]

how have you been on mycophenalate...........is that one of the anti organ rejection DMARDS

[Hidden]

Hydroxy/plaquenil does have some side effects for us all,,i know!!!I have been taking this for 8months now,,nearly giving up on it a time or too.Imust say in the early days some of the side effects were aweful,,,i also in the first few months,,my god ,,don't dare sneeze!!! lol,,seriously!!The head aches were aweful too!!If i had stoped this drug,,goodness know's were i would be now,,i think it has helped me lots.The side effects do settle down.

[collette]

Hi Jani the list is endless, I started with really bad pains in my knees to the point I couldn't stand and hot flushes. I have pain in my neck, spine and shoulders. my ankles swell up, I have tinnitus, dry eye, I have had pain in my wrists, depression, suffered with this for a number of years but seems to be worse as I feel unwell, cold and flu symptoms when I have a flare fatigue really bad so tired all the time. My blood tests revealed very high inflammation markers and kept rising. I have recently had numbness and tingling in my fingers and feet. My eyes are very sensitive to light.

[jani4063 in reply to collette]

Hi Collette,

My symptoms have been many and vast, initially it was mainly severe joint pains in my hands and wrists which i originally put down to work as i move heavy xray equipment, but then extreme fatigue set in, dry eyes and mouth..headaches, and fever, nightsweats, tendonytisis, triggering of almost all my fingers...and also pins and needles down both shoulders and arms which my physio said was classic carpal tunnel, but the symptoms can go or change very erractically, at the moment i am suffering with my knees, elbows and feet....but i always get real swelling in the affected joints..i find the symptoms are always worse around the time of my period, so i definately think hormones have a lot to do with it...i had my 1st episode about 14 years ago after the birth of my daughter, when i suffered a blood clot in my lungs and a dvt in my leg which they put down to the pregnancy but then i developed the classic lupus symptoms fatigue, joint pain etc..after numerous tests they said it was inflammatory arthritis but luckily it only lasted about 6 months then did not reappear until about 3-4 years ago which i think could be tied in with the peri-menopause...but unfortunately it is just getting worse, i have had a diagnosis of primary sjogrens, then rheumatoid arthritis and now sle based on my last lot of bloods....coupled with symptoms of hair loss, dry patches in my nose and outer ears, fatigue, weight , chest pain and breathlessness, and the usual agonising joint pain.

But to get to this point has taken 3-4 years of thinking am i going mad, am i imaging it, is my pain threshold really low? and the support i have received has been dreadful, they made an appointment for me to discuss the new diagnosis of lupus before they had told me i had lupus so i found out over the phone from a nurse......it was so matter of fact as though i had a common cold or something. I am currently trying to find out if there has been any damage to my internal organs as i have had protien in my urine and headaches etc but again it takes forever,

The one saving grace has been finding this site and people who understand and are going through the same thing, which makes a real difference.....hope you get your diagnosis soon

take care

Jani,

[amandalilley]

hydroxy caused this in me, also made me sick and the runs, brought me out in a rash and did nothing to control the pain. kept on it for 6 weeks and then weighed up pros and cons and ditched....

Hope it gets better and works for you. sending hugs and love to ease the headaches. xx

[jani4063 in reply to amandalilley]

thanks for the reply.........i took the hydroxy last night instead of twice a day morning and evening and it seemed to help, but i only took one tablet,i thought i would try on a lower dose for a little while to see if that will help with the headaches!

[Pammy76]

Hi all I have been taking hydroxy for 2 years now it controls the flares but I get terrible migraines from time to time, I have learnt to live with them. I hope you feel better soon x

[glasgowguy]

my consultant had me on that, it made me very light sensitve so asked for it to be changed as you have to get your eyes checked, the consultant won't be bothered if your eyesight goes, its their job to treat you but the hydro and went onto azathyroprine and was on that for 16 years until lupus went for my kidneys so be careful as you only get one pair of eyes and kidneys not everything agrees with each patient

[behappy1]

I had awful headaches when I first started them so my consultant changed it to one a day. that made a big difference.