Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 i know what you mean about the weather. I have been off work since April 1st for surgery. I have had the pleasure of the summer heat. Usually I love the heat. I am a recovering sun worshiper. Now, i go out into the hot weather and I feal like every once of energy is sucked right out of me. It doesn't help that the salagen makes you sweat for no reason at all, so on top of the lack of energy, you become dehydrated. The good thing about being off of work this long (i am still not back yet) is that I have actually been able to get off daily steroid dosing. I was taking upward of 80-100mg a day for the last 2 years. It's a wonder that my bones are still in tact!!! It has been the ONLY thing that has allowed me to live a near to normal life. Without them at this time it is difficult and painfull. I will be back on them when i go to work. My rheumatologist actually offered to put me on full disability. I didn't take it seriously when he made the offer because I love my work even if the stress is killing me with the RA flares. But, now, I don't know what to do. I may actually be able to cut back on all the meds I am on. I am maxed out on dosages on the methotrexate, plaquinal, salagen, remicade (max dose every 4 weeks), and the steroids, narcotics, and neurotin that I take in addition to the others. I don't know what to do. Some days I don't know how I am going to get through the day. No one in my family understands what it is I am going through. My sister does from a clinical stand point (we are both nurses). But no one in my family has this. There are days where I just break down and cry. I guess a good cry is good for the soul. Oh well. I guess I just needed to vent. Thanx for listening...........Marina. Canal Winchester, Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2004 Report Share Posted August 12, 2004 Welcome, Marina! I'm sorry to hear that you have such severe RA. What sort of surgery did you have? Even though most of your family doesn't understand, I believe you'll find a lot of people here who do. Hope you like it here. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Re: eye problems > > i know what you mean about the weather. I have been off work since > April 1st for surgery. I have had the pleasure of the summer heat. > Usually I love the heat. I am a recovering sun worshiper. Now, i go > out into the hot weather and I feal like every once of energy is > sucked right out of me. It doesn't help that the salagen makes you > sweat for no reason at all, so on top of the lack of energy, you > become dehydrated. The good thing about being off of work this long > (i am still not back yet) is that I have actually been able to get > off daily steroid dosing. I was taking upward of 80-100mg a day for > the last 2 years. It's a wonder that my bones are still in tact!!! > It has been the ONLY thing that has allowed me to live a near to > normal life. Without them at this time it is difficult and > painfull. I will be back on them when i go to work. My > rheumatologist actually offered to put me on full disability. I > didn't take it seriously when he made the offer because I love my > work even if the stress is killing me with the RA flares. But, now, > I don't know what to do. I may actually be able to cut back on all > the meds I am on. I am maxed out on dosages on the methotrexate, > plaquinal, salagen, remicade (max dose every 4 weeks), and the > steroids, narcotics, and neurotin that I take in addition to the > others. I don't know what to do. Some days I don't know how I am > going to get through the day. No one in my family understands what > it is I am going through. My sister does from a clinical stand > point (we are both nurses). But no one in my family has this. > There are days where I just break down and cry. I guess a good cry > is good for the soul. Oh well. I guess I just needed to vent. Thanx > for listening...........Marina. Canal Winchester, Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 I woke up today hurting really bad. Tonight I get my Humira injection. The weather went from hot and humid here to chilly overnight. Will that also trigger more pain? I also have the ceiling fan on because I get hot sometimes at night (3 doggies sleep all around me giving lots of body heat!), then I get cold sometimes. My shoulder and hips have been hurting the past few days and that is totally new to me. Becky [ ] Re: eye problems i know what you mean about the weather. I have been off work since April 1st for surgery. I have had the pleasure of the summer heat. Usually I love the heat. I am a recovering sun worshiper. Now, i go out into the hot weather and I feal like every once of energy is sucked right out of me. It doesn't help that the salagen makes you sweat for no reason at all, so on top of the lack of energy, you become dehydrated. The good thing about being off of work this long (i am still not back yet) is that I have actually been able to get off daily steroid dosing. I was taking upward of 80-100mg a day for the last 2 years. It's a wonder that my bones are still in tact!!! It has been the ONLY thing that has allowed me to live a near to normal life. Without them at this time it is difficult and painfull. I will be back on them when i go to work. My rheumatologist actually offered to put me on full disability. I didn't take it seriously when he made the offer because I love my work even if the stress is killing me with the RA flares. But, now, I don't know what to do. I may actually be able to cut back on all the meds I am on. I am maxed out on dosages on the methotrexate, plaquinal, salagen, remicade (max dose every 4 weeks), and the steroids, narcotics, and neurotin that I take in addition to the others. I don't know what to do. Some days I don't know how I am going to get through the day. No one in my family understands what it is I am going through. My sister does from a clinical stand point (we are both nurses). But no one in my family has this. There are days where I just break down and cry. I guess a good cry is good for the soul. Oh well. I guess I just needed to vent. Thanx for listening...........Marina. Canal Winchester, Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Thank you for the welcome, . Reading the messages posted has me believing that you are right. I now have a place to go for support. I had a tendon repaired in my foot and ankle. the RA didn't help things any. I still have ankle instability due to the RA. Too many days I feel like this just bites!!! Thanks for the link. I will check it out. Take Care.....Marina > Welcome, Marina! I'm sorry to hear that you have such severe RA. What > sort of surgery did you have? > > Even though most of your family doesn't understand, I believe you'll > find a lot of people here who do. > > Hope you like it here. > > > > > I'll tell you where to go! > > Mayo Clinic in Rochester > http://www.mayoclinic.org/rochester > > s Hopkins Medicine > http://www.hopkinsmedicine.org > > > [ ] Re: eye problems > > > > > > i know what you mean about the weather. I have been off work since > > April 1st for surgery. I have had the pleasure of the summer heat. > > Usually I love the heat. I am a recovering sun worshiper. Now, i go > > out into the hot weather and I feal like every once of energy is > > sucked right out of me. It doesn't help that the salagen makes you > > sweat for no reason at all, so on top of the lack of energy, you > > become dehydrated. The good thing about being off of work this long > > (i am still not back yet) is that I have actually been able to get > > off daily steroid dosing. I was taking upward of 80-100mg a day for > > the last 2 years. It's a wonder that my bones are still in tact!!! > > It has been the ONLY thing that has allowed me to live a near to > > normal life. Without them at this time it is difficult and > > painfull. I will be back on them when i go to work. My > > rheumatologist actually offered to put me on full disability. I > > didn't take it seriously when he made the offer because I love my > > work even if the stress is killing me with the RA flares. But, now, > > I don't know what to do. I may actually be able to cut back on all > > the meds I am on. I am maxed out on dosages on the methotrexate, > > plaquinal, salagen, remicade (max dose every 4 weeks), and the > > steroids, narcotics, and neurotin that I take in addition to the > > others. I don't know what to do. Some days I don't know how I am > > going to get through the day. No one in my family understands what > > it is I am going through. My sister does from a clinical stand > > point (we are both nurses). But no one in my family has this. > > There are days where I just break down and cry. I guess a good cry > > is good for the soul. Oh well. I guess I just needed to vent. Thanx > > for listening...........Marina. Canal Winchester, Ohio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2004 Report Share Posted August 13, 2004 Hi Becky!! How does Humira work out for you?? I have been on Remicade since late November of last year. I get it every 4 weeks (rather that the routine 6 or 8 weeks). That is such an annoyance because I have to go in to the office for it and stay for about 3-4 hours because of the high dose I take. It barely works and it doesn't even last 4 weeks!! The weather can effect the way you feel. I have noticed on hot, and especially, humid days, my energy level is very low. I feel fine one moment, then real bad the next. I find I have to take more frequent breaks. If I don't rest when I get tired, I start to feel ill, like I am coming down with the flu or something. My pain started out with hip and shoulder. But I have noticed that the pain, outside of flare ups, seems to move around to various joints. Hip and shoulder pain are common. Take care......Marina > I woke up today hurting really bad. Tonight I get my Humira injection. The weather went from hot and humid here to chilly overnight. Will that also trigger more pain? I also have the ceiling fan on because I get hot sometimes at night (3 doggies sleep all around me giving lots of body heat!), then I get cold sometimes. My shoulder and hips have been hurting the past few days and that is totally new to me. > > Becky > [ ] Re: eye problems > > > i know what you mean about the weather. I have been off work since > April 1st for surgery. I have had the pleasure of the summer heat. > Usually I love the heat. I am a recovering sun worshiper. Now, i go > out into the hot weather and I feal like every once of energy is > sucked right out of me. It doesn't help that the salagen makes you > sweat for no reason at all, so on top of the lack of energy, you > become dehydrated. The good thing about being off of work this long > (i am still not back yet) is that I have actually been able to get > off daily steroid dosing. I was taking upward of 80-100mg a day for > the last 2 years. It's a wonder that my bones are still in tact!!! > It has been the ONLY thing that has allowed me to live a near to > normal life. Without them at this time it is difficult and > painfull. I will be back on them when i go to work. My > rheumatologist actually offered to put me on full disability. I > didn't take it seriously when he made the offer because I love my > work even if the stress is killing me with the RA flares. But, now, > I don't know what to do. I may actually be able to cut back on all > the meds I am on. I am maxed out on dosages on the methotrexate, > plaquinal, salagen, remicade (max dose every 4 weeks), and the > steroids, narcotics, and neurotin that I take in addition to the > others. I don't know what to do. Some days I don't know how I am > going to get through the day. No one in my family understands what > it is I am going through. My sister does from a clinical stand > point (we are both nurses). But no one in my family has this. > There are days where I just break down and cry. I guess a good cry > is good for the soul. Oh well. I guess I just needed to vent. Thanx > for listening...........Marina. Canal Winchester, Ohio > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Thanks for checking in, . You sound good! If you need anything more specific about any particular eye condition, please let me know. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] eye problems > Hi everyone. I don't post very often and haven't posted in several months - I've been out of town with school. I'm trying to get caught up on the events of the last several months. I am happy to hear of some of your successes (congratulations Tess on the weight loss and successful move) and am saddened to hear of the difficult times that some of you are going through. My thoughts are with all of you in your times of need. > > Regarding weather and how it effects those of us with RA, my most difficult times have been in the heat of the summer in AZ - the heat without air conditioner (my home was cooled with a swamp cooler) left me completely exhausted with no energy to move. My joints weren't any better or worse, but I just had NO energy. > > Jan - the dirt in Arizona is a constant -- It may impove when you get the driveway, but there is No avoiding it. Afterall, you are now living in the desert!! By the way, I will be out there in January - April. We should try to get together for lunch or something > > I never knew all of the effects that RA can have on the eyes. I know about the drying/Sjogrens and I remember some of you posting with certain problems. But just yesterday I had an eye dDr apt. since I have been on plaquenil. The dr noticed 3 things with my eyes. 1) pressure was a little high, 2) something having to do with the sclera of my eye that is not a problem right now but may develop into scleritis and 3) some nerve changes in one of my eyes. So thank you (and anyone else) for posting the info on eyes. It couldn't have come at a better time to keep me informed on my own eye problems. > > I hope you are all doing well and getting the help that you need! > > McK in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2004 Report Share Posted August 15, 2004 It was working great until recently. I've been having a lot of pain again. The weather suddenly has turned very cool here and I'm wondering if that's why. I also quit taking a food supplement that was helping. I was wondering if it was helping so I quit, so I think it was what made the difference. I don't know. I did get the Humira one day late the last time and I don't know if that makes a big difference or not. Becky [ ] Re: eye problems > > > i know what you mean about the weather. I have been off work since > April 1st for surgery. I have had the pleasure of the summer heat. > Usually I love the heat. I am a recovering sun worshiper. Now, i go > out into the hot weather and I feal like every once of energy is > sucked right out of me. It doesn't help that the salagen makes you > sweat for no reason at all, so on top of the lack of energy, you > become dehydrated. The good thing about being off of work this long > (i am still not back yet) is that I have actually been able to get > off daily steroid dosing. I was taking upward of 80-100mg a day for > the last 2 years. It's a wonder that my bones are still in tact!!! > It has been the ONLY thing that has allowed me to live a near to > normal life. Without them at this time it is difficult and > painfull. I will be back on them when i go to work. My > rheumatologist actually offered to put me on full disability. I > didn't take it seriously when he made the offer because I love my > work even if the stress is killing me with the RA flares. But, now, > I don't know what to do. I may actually be able to cut back on all > the meds I am on. I am maxed out on dosages on the methotrexate, > plaquinal, salagen, remicade (max dose every 4 weeks), and the > steroids, narcotics, and neurotin that I take in addition to the > others. I don't know what to do. Some days I don't know how I am > going to get through the day. No one in my family understands what > it is I am going through. My sister does from a clinical stand > point (we are both nurses). But no one in my family has this. > There are days where I just break down and cry. I guess a good cry > is good for the soul. Oh well. I guess I just needed to vent. Thanx > for listening...........Marina. Canal Winchester, Ohio > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 In a message dated 6/11/2005 5:53:48 A.M. Eastern Daylight Time,Tawny writes: eye problems Hi Tawny ... I was on Plaquenil and had limited success with it. I did experience some blurry vision that came and went. I also became exhausted because it kept making my white blood cell count drop low. That will make you feel as though you've run a marathon!!! DO get checked out -- sounds like it either needs to be adjusted or discontinued. Thanks for the nice comment on my new blog. I've been a published writer quite a bit and I am submitting it to several magazines -- we'll see. Feel better!!! Love and Prayers, Beth ~*~*~*~*~*~*~*~* Read my blog at _www.ThinkBigAboutHealing.blogspot.com_ (http://www.thinkbigabouthealing.blogspot.com/) ~*~*~*~*~*~*~*~* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 Good luck on your writing, never give up on something you like to do. I will keep my fingers crossed for you, keep us posted. I was fatiqued and feeling bad before the Plaquenil. I was on humira, and when my lab work came back, he told me to stop taking it, that he thought it was causing problems. This is why I have to go back so soon, more lab work, yuck. But, at least he's taking care of the problem, and not putting it on the back burner. Will let you know how it all goes,T > > In a message dated 6/11/2005 5:53:48 A.M. Eastern Daylight Time,Tawny writes: > > eye problems > Hi Tawny ... I was on Plaquenil and had limited success with it. I did > experience some blurry vision that came and went. I also became exhausted > because it kept making my white blood cell count drop low. That will make you feel > as though you've run a marathon!!! DO get checked out -- sounds like it > either needs to be adjusted or discontinued. > > Thanks for the nice comment on my new blog. I've been a published writer > quite a bit and I am submitting it to several magazines -- we'll see. > > Feel better!!! > > > > Love and Prayers, > Beth > > ~*~*~*~*~*~*~*~* > Read my blog at _www.ThinkBigAboutHealing.blogspot.com_ > (http://www.thinkbigabouthealing.blogspot.com/) > > ~*~*~*~*~*~*~*~* > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 Could you be developing Sjogrens? My vision does that too. Sometimes I have to turn off the computer because I get sooo blurry I can't read anything on the screen. I hope you get to feeling better. Let us know what the eye doc thinks....Marina > I have been on Plaquenil almost 5 weeks now. After about 2-3 weeks, > started getting blurred vision, and dizziness. I'm thinking it could > be the side effects of the drug, and I need to get use to it. I > haven't been feeling well, I am so fatiqued that I can't hardly get > around. I'm having a lot of pain in my hip, so it's just everything > bothering me. I am running a slight fever today also. > I did call, and made an appointment at the eye doctor. So, hopefully > we can find out what's going on. I sure wanted to stay on the > Plaquenil for awhile. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2005 Report Share Posted June 11, 2005 Marina, I was dx with Sjogrens a couple of years ago. That could be possible, will need to check into that. I will also talk to my new rheumy about it. I will keep you posted, thanks T > > I have been on Plaquenil almost 5 weeks now. After about 2-3 weeks, > > started getting blurred vision, and dizziness. I'm thinking it could > > be the side effects of the drug, and I need to get use to it. I > > haven't been feeling well, I am so fatiqued that I can't hardly get > > around. I'm having a lot of pain in my hip, so it's just everything > > bothering me. I am running a slight fever today also. > > I did call, and made an appointment at the eye doctor. So, hopefully > > we can find out what's going on. I sure wanted to stay on the > > Plaquenil for awhile. T Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 One of my symptoms when I got sick was trouble with my vision. I had trouble with light (it hurt), with darkness (made me more dizzy), and with what seemed like perception problems (depth and stuff like that). I never did find out the cause of it, other than knowing I have Hashimoto's thyroid disease. It cleared up somewhat while I was detoxing, but the end result is that my eyesight has never been the same. I've also gotten red and inflamed tissue on my eyelids occasionally. Not sure if that is a reaction to my makeup or not. I now wear reading glasses. Patty > and my eye sight has become blurry, but i noticed only when i look > > to the left. on the 16th they are performing an MRI, don't know > > what that will accomplish but what the hell. > > I have this and it went from blurry to double vision and bulging eyes > and the MRI said it was indicative of Graves ophthamopathy. There are > two causes for this. One is thyroid...mine is fine. and the ther is > toxins in the body. Quote Link to comment Share on other sites More sharing options...
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