Im a Lupy man
1 - 20 of 34 Posts
Welcome to the forum lupyman!
It sounds as if you are managing well and it's great that you can carry on with your work. I hope you have good caring doctors and supportive family and friends. We have several male members in fact but don't hear from them so much - I am sure some will be along soon.
Rest, rest, rest, is the major recommendation for dealing with lupus fatigue which we all complain of more than any other symptom but that's much easier said than done. It is important to rule out all possible causes such as anemias, diabetes, fibromyalgia which disrupts normal sleep patterns, even thyroid. Often these are neglected simply because it's assumed men don't get them, like fibro.
Many people find the fatigue lessens when the disease is better controlled. If you live in the USA or UK there's another antimalarial called Quinacrine or Mepacrine that can be added to the Plaquenil. The combination can be especially effective for energising general disease modification and easing the most common symptoms such as joint pain. It makes the Plaquenil more effective.
Or maybe a steroid sparing drug like Imuran or Methotrexate, or MMF/Cellcept would relieve symptoms and enable you to reduce or get off the Prednisone.
If you are in the USA ask your doctors to check your DHEA levels. They are often low in people with lupus and a supplement to bring up to normal levels can improve general wellbeing. It must be taken with medical supervision though. Supplements can also help to reduce Prednisone needs and osteoporosis risks although its effects on men are not clear.
I wonder if you have been checked for blood abnormalities, called anti phospholipids. The tests are the " lupus anticoagulant" clotting tests and anticardiolipins. This condition can cause migraine like headaches and a host of other symptoms even when it doesn't cause major incidents like thrombosis or clots
You can of course post on any forum section: men aren't limited to this one.
I hope you'll find the forum very helpful in every way
All the best
Clare
It sounds as if you are managing well and it's great that you can carry on with your work. I hope you have good caring doctors and supportive family and friends. We have several male members in fact but don't hear from them so much - I am sure some will be along soon.
Rest, rest, rest, is the major recommendation for dealing with lupus fatigue which we all complain of more than any other symptom but that's much easier said than done. It is important to rule out all possible causes such as anemias, diabetes, fibromyalgia which disrupts normal sleep patterns, even thyroid. Often these are neglected simply because it's assumed men don't get them, like fibro.
Many people find the fatigue lessens when the disease is better controlled. If you live in the USA or UK there's another antimalarial called Quinacrine or Mepacrine that can be added to the Plaquenil. The combination can be especially effective for energising general disease modification and easing the most common symptoms such as joint pain. It makes the Plaquenil more effective.
Or maybe a steroid sparing drug like Imuran or Methotrexate, or MMF/Cellcept would relieve symptoms and enable you to reduce or get off the Prednisone.
If you are in the USA ask your doctors to check your DHEA levels. They are often low in people with lupus and a supplement to bring up to normal levels can improve general wellbeing. It must be taken with medical supervision though. Supplements can also help to reduce Prednisone needs and osteoporosis risks although its effects on men are not clear.
I wonder if you have been checked for blood abnormalities, called anti phospholipids. The tests are the " lupus anticoagulant" clotting tests and anticardiolipins. This condition can cause migraine like headaches and a host of other symptoms even when it doesn't cause major incidents like thrombosis or clots
You can of course post on any forum section: men aren't limited to this one.
I hope you'll find the forum very helpful in every way
All the best
Clare
Thanks for your support
If one more of my wifes friends say, "I thought only women get lupus" I may scream! I was dx 8 months ago after much trial by illimination. I have very good Drs. ; however they were convinced I had lymphoma. Anyone out there been mis- dxed with lymphoma? My last 3mo. check up confirmed a flare up. Low wbc. Also high protien in the urine test. Of the 12lbs that I gained back I lost 8 of them. Does anyone out there have a weight loss issue? Thanks for any answers!
If one more of my wifes friends say, "I thought only women get lupus" I may scream! I was dx 8 months ago after much trial by illimination. I have very good Drs. ; however they were convinced I had lymphoma. Anyone out there been mis- dxed with lymphoma? My last 3mo. check up confirmed a flare up. Low wbc. Also high protien in the urine test. Of the 12lbs that I gained back I lost 8 of them. Does anyone out there have a weight loss issue? Thanks for any answers!
Welcome lupyman,
I only wish I had a weight loss problem, I have the opposite unfortunately. Since Lupus can effect anything basically, I'm sure it messes with that part as well. During a flare would be a good reason to drop weight since your body is working harder than usual. I hope you get over it quickly, we all know how much fun flares are. Lupus headaches are pretty common for us but remember to mention it to your doctor. It's always best to keep them informed about what's going on. Hopefully it's not the coffee! What would we do without coffee? I don't even want to think about it!
I only wish I had a weight loss problem, I have the opposite unfortunately.
Since Lupus can effect anything basically, I'm sure it messes with that part as well. During a flare would be a good reason to drop weight since your body is working harder than usual. I hope you get over it quickly, we all know how much fun flares are. Lupus headaches are pretty common for us but remember to mention it to your doctor. It's always best to keep them informed about what's going on. Hopefully it's not the coffee! What would we do without coffee? I don't even want to think about it! Hi lupyman and :welcome:
Sorry things are flaring up for you again. Are you still on Prednisone and despite that losing weight?
When my lupus was out of control I could drop vast amounts of weight quite quickly and it's not uncommon for Lupus to do that. Once I added Immunosuppressants (in my case Azathioprine) it was not as drastic and flares are fewer and not as severe.
Plaquenil can take a fair while to work but you have been on it for 8 months is that right? Are you taking 400mg daily? If so then it might be worth questioning your docs about how well controlled your disease is, they may add something else to the mix to improve things for you. Quality of life is very important.
Take care,
love
Lily
Sorry things are flaring up for you again. Are you still on Prednisone and despite that losing weight?
When my lupus was out of control I could drop vast amounts of weight quite quickly and it's not uncommon for Lupus to do that. Once I added Immunosuppressants (in my case Azathioprine) it was not as drastic and flares are fewer and not as severe.
Plaquenil can take a fair while to work but you have been on it for 8 months is that right? Are you taking 400mg daily? If so then it might be worth questioning your docs about how well controlled your disease is, they may add something else to the mix to improve things for you. Quality of life is very important.
Take care,
love
Lily
Oh sorry regarding the Lymphoma ..........Lupus is called the disease of a thousand faces, it imitates everything!
So whilst they never suspected lymphoma a lot of other things were tested and ruled out like MS and another neuro disorder called Wilsons disease and before that a whole host of other stuff :wink2: even leukemia!
regarding the Lymphoma ..........Lupus is called the disease of a thousand faces, it imitates everything!So whilst they never suspected lymphoma a lot of other things were tested and ruled out like MS and another neuro disorder called Wilsons disease and before that a whole host of other stuff :wink2: even leukemia!
If you ever decide to drop the coffee, make sure you wean yourself. Caffeine withdrawal headaches are brutal!!! Speaking from a former heavy coffee drinker of course!!! Now I have 1 or 2 cups a day and that's it. I used to drink a pot of coffee after supper and sleep like a charm.Tom;518153 said:Hopefully it's not the coffee!
Now that I got that out. Welcome to the forum Lupeyman. You will find lots of support and help here through the forum from the men and lots of women.
Nutty
Coffee headaches
Well I'm fortunate, My dr. says coffee (in moderation) is okay to help fight fatigue. I know about caffiene withdrawl headaches and I do drink 4-6 cups over the course of a day. This nasty flare up I'm in now is causing headaches that are at times quite debilitating. Tylenol ,an ice pack on the back of my head, and a completly dark room to rest in, has been needed to get the headache to subside. Are you guys fighting headaches like this? As far as my weight loss. I have a great appetite since going back on prednisone but can't quite get the pounds back on. Is anyone on the forum having trouble with weight loss? My rash is gone but my under arm lymph nodes are still quite swollen. Also the parotid gland on my right chin is swollen. Have you guys had issues with swollen glands. Wow, I'm asking a lot of questions. I have to say that since finding this forum, I don't feel quite so isolated. Its been tough to keep laying all this on my wife while trying to shelter my kids from my distress as much as I can. Thanks again for all of your insights.
Well I'm fortunate, My dr. says coffee (in moderation) is okay to help fight fatigue. I know about caffiene withdrawl headaches and I do drink 4-6 cups over the course of a day. This nasty flare up I'm in now is causing headaches that are at times quite debilitating. Tylenol ,an ice pack on the back of my head, and a completly dark room to rest in, has been needed to get the headache to subside. Are you guys fighting headaches like this? As far as my weight loss. I have a great appetite since going back on prednisone but can't quite get the pounds back on. Is anyone on the forum having trouble with weight loss? My rash is gone but my under arm lymph nodes are still quite swollen. Also the parotid gland on my right chin is swollen. Have you guys had issues with swollen glands. Wow,
I'm asking a lot of questions. I have to say that since finding this forum, I don't feel quite so isolated. Its been tough to keep laying all this on my wife while trying to shelter my kids from my distress as much as I can. Thanks again for all of your insights.Hi,
Lupus headaches are quite common for many, it's good that the Tylenol alone is enough to treat them. If that stops working then there are other solutions.
Swollen glands (under arms, neck, groin etc.) are extremely common. Mine are always up slightly, but at times of more disease activity they are very pronounced.
As far as the parotid glands go it's much more common to get swelling of those with Sjogren's - do you know whether your doc has tested for that? It would be important to establish if you have this condition because your docs do need to be vigilant and check your lymph nodes regularly (reason being that there is a slightly increased chance of someone getting lymphoma if they have sjogren's.) and keeping an eye on it is recommonded.
Lupyman is it a Rheumatologist who is treating you or your family doctor?
love
Lily
Lupus headaches are quite common for many, it's good that the Tylenol alone is enough to treat them. If that stops working then there are other solutions.
Swollen glands (under arms, neck, groin etc.) are extremely common. Mine are always up slightly, but at times of more disease activity they are very pronounced.
As far as the parotid glands go it's much more common to get swelling of those with Sjogren's - do you know whether your doc has tested for that? It would be important to establish if you have this condition because your docs do need to be vigilant and check your lymph nodes regularly (reason being that there is a slightly increased chance of someone getting lymphoma if they have sjogren's.) and keeping an eye on it is recommonded.
Lupyman is it a Rheumatologist who is treating you or your family doctor?
love
Lily
Thanks Nutty. I will try to remember that although I don't plan on giving up caffeine unless I absolutely have to! It falls right under chocolate on my list. :bigsmile:
Your doc says caffeine helps fatigue Lupyman? No wonder I like it but I don't think it really helps a whole lot. Pain meds are the only thing that noticeably help me with that. I took Tylenol for years but had to step up to Vicodin. I'm at the point now where I need to step up again soon.
Headaches, oh yeah. Mild ones often but the very painful ones you are talking about I only get occationally. The blood thinners I take probably help a lot in that department.
Swollen glands are not much fun either but I've gotten used to it. Swollen groin glands are probably a whole different topic in this section. :rotfl:
You've found a great support group. I really don't know how I would have coped without all the members on this site. Your wife is welcome to join too if she would like to. We are happy to help anyone effected by this disease, family and friends included.
I hope you get over your flare soon. Write down all your symptoms as you think of them and keep your rhuemy up to date. It gives them direction to check if something else is going on too.
Your doc says caffeine helps fatigue Lupyman? No wonder I like it but I don't think it really helps a whole lot. Pain meds are the only thing that noticeably help me with that. I took Tylenol for years but had to step up to Vicodin. I'm at the point now where I need to step up again soon.
Headaches, oh yeah. Mild ones often but the very painful ones you are talking about I only get occationally. The blood thinners I take probably help a lot in that department.
Swollen glands are not much fun either but I've gotten used to it. Swollen groin glands are probably a whole different topic in this section. :rotfl:
You've found a great support group. I really don't know how I would have coped without all the members on this site. Your wife is welcome to join too if she would like to. We are happy to help anyone effected by this disease, family and friends included.
I hope you get over your flare soon. Write down all your symptoms as you think of them and keep your rhuemy up to date. It gives them direction to check if something else is going on too.
Thanks for all the info !
I am seeing a Rhumetoligist. Actually 2 different ones. I have 4 children. All beautiful healthy girls. As far as the vicodin, does that work for anyone else on the forum? Is there any concern with addiction with the vicodin? I may see my Dr. early if these migraines don't get better. I will ask him about vicodin. Thanks everyone!
I am seeing a Rhumetoligist. Actually 2 different ones. I have 4 children. All beautiful healthy girls. As far as the vicodin, does that work for anyone else on the forum? Is there any concern with addiction with the vicodin? I may see my Dr. early if these migraines don't get better. I will ask him about vicodin. Thanks everyone!
Joined
·
1,563 Posts
Hi Lupyman
You have already gotten a lot of wonderful advice and support to.I just want to welcome you to the sight and glad you are feeling better juat by joining the sight.I used to get the worse migraines also before being diagnosed and then they did eventually got somewhat better.i also did have to quit work because i just could not keep doing it all.I am sl glad you can keep working but be careful to rest when you can.you cannot be told that to much ever.I also am taking imatrex for the migraines and i have to say it works wonderful for mine but everbody is differant what works for them with the migraines.I sure hope you continue to enjoy this sight and i hope things continue to get better for you(((hugs)))).
Tammy
You have already gotten a lot of wonderful advice and support to.I just want to welcome you to the sight and glad you are feeling better juat by joining the sight
.I used to get the worse migraines also before being diagnosed and then they did eventually got somewhat better.i also did have to quit work because i just could not keep doing it all.I am sl glad you can keep working but be careful to rest when you can.you cannot be told that to much ever.I also am taking imatrex for the migraines and i have to say it works wonderful for mine but everbody is differant what works for them with the migraines.I sure hope you continue to enjoy this sight and i hope things continue to get better for you(((hugs)))).Tammy
Hi Tammy, My headaches are not getting any better. Does imatrex have any bad side effects? I'm really at my wits end. I have taught myself to deal with the fatigue and joint pain but these headaches are another animal altogether. My primary care Dr.has been no help at all. I am searching for a new Dr. My Rhuemy is great, but wants to keep deferring my headache issues to someone else. Thank you for your insights.
Hi Lupeyman,
I took codeine based pain killers for joint pain, but it didn't touch the terrible
headaches..I am on both codeine based pain killers, and tryphans for the migraines.
I was just diagnosed with Migraines, so maybe..that is a possibility, for you as well.
Welcome To The Site!
Sandy
I took codeine based pain killers for joint pain, but it didn't touch the terrible
headaches..I am on both codeine based pain killers, and tryphans for the migraines.
I was just diagnosed with Migraines, so maybe..that is a possibility, for you as well.
Welcome To The Site!
Sandy
Hi Sandy, I need something for my headaches that I can take and still go to work with. I have an excellent attendence record at work but I am afraid if they find out about my SLE (even more so with CNS involvement) that I will be put on the short list for our corporate continuing downsizing. I can work through my fatigue and joint pain but not these headaches. Thanks for your info.
Migraines and Parotid swelling
Lupyman,
My Neurologist diagnosed my headaches as migraines....I didn't realize that was what they were. He just gave me samples of a new medication for migraines called Treximet that is a combination of Imitrex and Naproxen. It is supposed to work better than Imitrex alone. I had a headache coming on today thanks to the weather moving through here (the remnants of Gustav) and took one and my headache was gone within the hour. It really did work well and didn't leave me tired and achey like the other migraine med I was on. There are lots of migraine meds out there, you might want to look into them. He also gave me samples of another one called Maxalt, but I haven't tried it yet. By the way, I have Sjogren's syndrome but haven't been diagnosed with Lupus. I get the parotid swelling from time to time. Warm compresses and massaging it helps me with that. My rheumy and ENT both helped me figure out the Sjogrens.
Nancy
Lupyman,
My Neurologist diagnosed my headaches as migraines....I didn't realize that was what they were. He just gave me samples of a new medication for migraines called Treximet that is a combination of Imitrex and Naproxen. It is supposed to work better than Imitrex alone. I had a headache coming on today thanks to the weather moving through here (the remnants of Gustav) and took one and my headache was gone within the hour. It really did work well and didn't leave me tired and achey like the other migraine med I was on. There are lots of migraine meds out there, you might want to look into them. He also gave me samples of another one called Maxalt, but I haven't tried it yet. By the way, I have Sjogren's syndrome but haven't been diagnosed with Lupus. I get the parotid swelling from time to time. Warm compresses and massaging it helps me with that. My rheumy and ENT both helped me figure out the Sjogrens.
Nancy
Nancy, Did they think the swollen parotid was contributing to the migraines? My headache has ebbed and worsenend for over a week now. My HMO is terrible at approving tests and referrals. I think a Neurologist should be consulted if the insurance folks will let me see one. I tried Maxalt last night. It numbed the throbbing but I woke up today with a dull nauseus headache. Thanks for the info.
1 - 20 of 34 Posts
Join the discussion
Join now to ask and comment!