I hit the wrong button

I hit the wrong button. I’m just wondering if you could tell me the kind of meds your taking and if they are working. My dr. Put me on an arthritis med, plus a steroid. I’m just saying they are NOT working for my pain. It is killing me just to type this. Please someone help me. I go in on the 24th to see my dr. And she has to give me something that will work. I just need some advice please anybody!!

Hello, I'm sorry you are in so much pain... I think I hit a denial spell for a while cuz I stopped taking my meds for about a week and I feel awful.. I am now back on them and hope to get some relief soon... As for what meds i'm on, her's my list:

Plaquenil - Lupus Meds

Claritin - Sinus Meds

Biotin - Hair/Nail Vitamin

Fish Oil -

Multi-Vitamin -

Trama-dol - pain meds

Meloxicam - inflammation meds

Clobetasol Propionate - Hair liquid for scalp

Good Luck and I hope it all works our for you

Torie, thank you so much!! I have written these down and I’m going to take them to my dr. To see if she will try these on me. I have to get something done.
Thank you for your time!

No problem... and good luck to ya... It's a long journey but together we can do this!!!!

Hi Gandalf,

Alot of the time rheumo's have to alter meds to see what helps a perosn, wheather it be one med or several and then sometimes they only last for so long and some patients are moved onto other drugs for another go but the link below explains different drugs used for Lupus/Arthritis and other symptoms linked to Lupus.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_learntreating.aspx?articleid=2246&zoneid=525

I take plaquenil 200mg daily which did help my DLE/SLE but after 2yrs now it's not working pointless taking it and the other i tried was Dapsone but my organs rejected the med and since then found out i've gone to fare with to much involvement so there's no meds to help me.

Come next month i think i'll be off the plaquenil.

Terri :)

Thanks Terri, so nothing is working for you? I’m going to ask about Plaquenil I hope that will work for me at least for a while. I have read some other post that people are having problems with being nausea that hits me a lot and vomit for no reason. It does not last long most of the time after I feel fine. I’m also extreamly sensitive to the sun and light. I have a room in my home that I have darkened all the windows. Which helps. Do you or anybody reading this have that problem? I don’t get the rashes. My dr. Keep saying “I don’t know why you don’t have rashes” does anyone else Not get rashes? Just wanting all the info I can get to take along to my dr. Thanks everyone

Hi Gandalf,

I have A1 Diseases overalpping Autoimmune Diseases which is more rare and we do have a few more members like it but it carries large involvements with symptoms overlapping plus i do have organ involvement besides and they won't even let me trial IV infusions to much risk plus i have other illnesses besides everything linked with Lupus...so all i'm allowed to take is upto 4000mg of paracetamol daily.

Can i just say that if you have Lupus it does'nt mean you have to have skin issues or DLE, it's to what degree lupus is working in your system.

Plaquenil is an excellent drug and when i first took it i was bad with side affects several in fact, so i slowly pulled myself off it but my rheumo who i first saw wanted me back on it and in the meantime a friend with Lupus said take it at night before going to bed and your sleeping the side affects off, so i went back on it and i had about a week of nausea hitting me none of the other side affects i was having before and since then nothing, i do get odd nausea but that can come from the disease alone besides meds doing it.

Your nausea and vomiting your getting now with the Lupus is a Gastro problem and you need this issue looking at as it could be IBS, Coeliac Disease or other issues, this link i'm adding will help regarding that.

http://www.lupusinternational.com/Related-Conditions/Gastrointestinal-Manifestations-and-Lupus-.aspx

Yes i'm very sensitive to light...i have to wear tinted glasses as i have a few eye problems plus i can't expose my body to light besides my eyes as i burn quickly but light can cause we to have migraines also and some members do suffer with them badly.

Terri :)

Terri, thank you so much for all this info. And the link I will check that out after I’m finished writing you. I hate to hear that other people are not feeling well, but at the same time I’m relieved that I’m not alone in all this. And that I’m not losing my mind. Which at times I do. Please keep me posted, you did say you have a dr. Appt in a few weeks right? I do as well on the 24. Which will be my last time seeing her, she is retiring and so I’ll be seeing someone new. I hate starting over, but then again I feel like I haven’t gotten started yet. The 2 meds they put me on a year ago are doing nothing.
Thanks again that really helps.
Robyn

Hello Robyn,

Your welcome and other members will answer you in due course especially where the plaquenil concerned as there's been so many discussion on it.

I see my rheumoon the 7th June and he his a lovely man i spent over an hour with him last time plus he's so carin hen your discussion things...my first rheumo was arrigant and i did end up having words with him but my dermo was so concerned about my health he forwarded me onto this new doctor and more up in the field of knowledge also.

Oh don't worry your not losing your mind the actual disease besides doctor's ontop can make you feel that way but your not it's what we all suffer daily but at different degree's.

Well after your next visit i do hope the new rheumo helps you just as much. :) xxx

Most of the arthritis meds take about 4-6 weeks before you notice a change. I tried Voltaren and Relafen. The Voltaren didn't really do much. The Relafen worked a little bit, but they all messed up my stomach. I am on Plaquenil now and I noticed a difference in my sleep habits (not needing 16hrs a day!) and severity of my flare within 2 weeks even though the med pamphlet says it should take 4-8 weeks. Everyone's different. I feel for you playing this medication game. It's so frustrating how it takes so long to get on just the right mixture of meds.

While waiting for your meds to kick in or your appointment... hot baths really help my aches. If I could take a hot bath every day, I would. I use lavender scented lotion to help me relax and sleep at night. Hot tea helps me too when I get the scratchy throat feeling. Plus it makes my body feel warm and just makes me feel good. Praying you get some relief soon.



Thank you so much taz I guess that is what this site is for! Thank god for it! It is helping so much with input from all of you. I will try the scented lotion and hit teas also! Thank you again. Tez_20 said:

Hello Robyn,

Your welcome and other members will answer you in due course especially where the plaquenil concerned as there's been so many discussion on it.

I see my rheumoon the 7th June and he his a lovely man i spent over an hour with him last time plus he's so carin hen your discussion things...my first rheumo was arrigant and i did end up having words with him but my dermo was so concerned about my health he forwarded me onto this new doctor and more up in the field of knowledge also.

Oh don't worry your not losing your mind the actual disease besides doctor's ontop can make you feel that way but your not it's what we all suffer daily but at different degree's.

Well after your next visit i do hope the new rheumo helps you just as much. :) xxx

Thanks everyone for all your help, I am going to try all your advise with that something will work. I would die to take a nice hot bath, however my loss of muscle I don’t think I could get out of the tub with out a Crain lol but I do take advantage of the hot showers they are helping. One day I hope to have a hot tub, then all of you will be invited!! I go to the dr. Again on the 24th and I’m going to talk to her about different suggestions you all have told me. Please keep me posted on how your all doing. I do try to get on here a few times a week and read the posts. Best to all of us!! Thank you again for all your help!

Hello Gandalf,

Your welcome from us all and i do apologize for the spelling mistakes which i made as i wear gloves while typing.

Just getting on when you can lets members know that your ok :)

Grandalf1



I do not take anything but steroids! They tried me on five difference lupus meds and I had bad side effect with them all. However I take medrol as the steroid, not Prednisone! When I swell, have rashes, and joint pain I take 4-6 mgs a day for a few days and then tapper down from there and it works for me. Sometimes I will need to take pain meds to break the cycle of pain as well!



I am very photo sensitive to the sun! My eyes during a flare are so bad at times I can’t open them while in the sun! I too, like you, have a dark room in my house that I have to stay in. My family asks me all the time if I am a bat! LOL! I do have a skin rash but it is different from the most common skin lupus! I have a rare form of skin lupus it is called tumid lupus! The bad thing is they don’t know that much about tumid lupus yet!



Wishing you all the best and I hope the Doctor can figure it out for you!



Deenie

Deenie, thank you for your reply. Yes I have been accused of being a bat! Lol but I love my dark room. Do you have problems going up stairs ? I get so discouraged I’m 51 and when I was younger I was so strong and could do anything, now I need help opening a bottle, I can’t go up stairs And I feel like my dr. Don’t believe me when I tell her my symptoms because I don’t have the “common” symptoms. Like the rash, hair loss, I don’t have a fever to often, but the pain is real the light sinsative is real and when I tell her about the nausea and vomiting she tells me it’s my diabetics but it is different then that. Just kind of discouraged.

My meds: Double dose of Celebrex for the severe osteoarthritis and possible RA, Plaquenil and pain meds (mostly Oxycontin and Tramadol). Lots of meds for other things including high blood pressure, Sjorgens (spelling?...and might just be for the dry mouth symptoms), reflux (Nexium needed since I have a hiatal hernia) and just so darn many! LOL

Lynn

Hot tub party!! :)

Ballerina8876
Yes :slight_smile:

Azathioprine really helped with my Lupus/SLE and I noticed no side effects. As for pain, I have been on pain medicines off and on for so many years, due to kidney issues. Tramadol does nothing for me sadly. I know there is a medication that will help me and help rebuild my opient receptors (unsure of spelling). I don’t like pain medicine because of the side effects. I am not suppose to take NSAIDS because of my kidneys and I’m allergic to medicines like Mobic. I am on nothing at the time. I heard Lyrica is great but it didn’t help. I’m sure that is due to prior use of so much pain medicine. I am researching what is best for me. Gavapatin helps a lot but haven’t been able to get any treatment because I am waiting on referral to new Rheumatologist. I am very photosensitive and if you wear glasses and get a note from your Rheumatologist stating your sensitivity, most insurance companies will work with you so you can get Transitions. I hardly ever get the rash either. I hope you can find the right treatment for you and can find comfort in life. Keep your chin ip and stay blessed.

gandalf1

I do not have problems climb a few stairs unless I am in a flare with joint pain! I am 55 and I don’t do much for exercise and I find my body getting weaker all the time. The simple things that I could do now are a Monumental task for me! I was working out at the gym last summer doing 30 minutes of cardio each day! But then I got a Vasculitis on both my lower legs and that was the end of that! I try in the evenings to go in to my pool and do Aqua therapy, but the water temperature is still a little cool because the pool is screened in.

Like you, I am “Allergic to the sun!” There are times that standing outside with the sun hitting my skin while my dog goes to the bathroom hurts! Which is about three to five minutes of sun exposure! It is crazy I know. I would just continue to push the points home with your rheumy and hope eventually he/she gets it!

They have tried five different medication with me and I had too many problems taking them! So for now I am on medrol (steroids) as needed!

I am here anytime you want to talk! Wishing you all the best in your dark room…Deenie



Gandalf1 said:
Deenie, thank you for your reply. Yes I have been accused of being a bat! Lol but I love my dark room. Do you have problems going up stairs ? I get so discouraged I'm 51 and when I was younger I was so strong and could do anything, now I need help opening a bottle, I can't go up stairs And I feel like my dr. Don't believe me when I tell her my symptoms because I don't have the "common" symptoms. Like the rash, hair loss, I don't have a fever to often, but the pain is real the light sinsative is real and when I tell her about the nausea and vomiting she tells me it's my diabetics but it is different then that. Just kind of discouraged.