Im a Lupy man

[lupyman]

Im a man with lupus. The fatigue is what gets me hardest. Also headaches so bad I get nauseus from them. Thank God for prednisone and plaquenil. I have not missed much work. I find that good old coffee gets me through my days.

[Clare.T]

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

[KarolH]

Hi Lupyman,

Love the user name.

I take Provigil 200mg a day for fatigue and coffee helps me too.

How long ago were you dx with Lupus?

Hope to get to know you better and welcome to a great place.

Are you in the US or UK?

[Surferboy]

Hey there Lupyman, a quick welcome (as wife's shouting for me to get off the computer) from a fellow bloke :)

Hope you can give me some support against all the ladies in here :)

Hope to speak to you more often.

[lupyman]

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!

[Tom]

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! :eek: What would we do without coffee? I don't even want to think about it! :p

[Lily]

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

[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!

[Nutty]

Hopefully it's not the coffee! :eek: What would we do without coffee? I don't even want to think about it! :p

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.

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

[lupyman]

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.

[Lily]

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

[LolaLola]

Hello Lupyman,
Just wanted to welcome you. How old are your children?
x Lola

[Tom]

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.

[lupyman]

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!

[macfamily53]

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

[lupyman]

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.

[Sage Hen]

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

[lupyman]

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.

[KidsPT]

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]

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.

[KidsPT]

Lupyman,

The doctors never mentioned there was a relationship between the swollen parotid glands and migraines, and I have had them together and separately. I suppose a flare could bring both on at the same time as symptoms of a flare.

Your PCP might approve a referral to a neurologist for intractable headaches which if yours has been going on for a week, might be considered intractable. Can't hurt to ask for a referral. That way it is documented also that the headaches are not better/or worsening.

Hope you get some relief soon. I know how prolonged headaches can really wear you down!

Nancy

[lupyman]

Nancy, My PCP would not give a referral. My Rhuemy did! I see a neurologist next week tuesday. This expensive Maxalt dulls things down but the headache just will not go completely away. My fatigue is back with a vengence. Does your neurologist link your headaches with your SLE?

[jacquip]

Hey Lupyman!!!!!!!

I was diagnosed Aug 7th and was suffering with the rash, fatigue, joint pains yadda yadda yadda.......... Anyway, since diagnosis I have been experiencing some strange sensations from sometimes in my head, down my legs and generally every part of my body. I've got appointment with Lupus nurse on Thurs so gonna make a list of all symptoms to find out if it a condition of the Lupus of it its something else. Having been healthy for 37 years it's so frustrating to feel 'ill' everyday. I'm trying to remain positive, but it really is hard and especially when I mention to people that I have SLE and they know someone who's 'got it really bad' or 'died from it'......... not want I want to hear.

I understand you not wanting to keep burdening your wife and family, i'm like that (I don't have a wife). That's why I'm glad I've found this site because I can ask questions and I can learn things about the condition.

My goodness I've written so much I'll stop now.

Btw Welcome to the site - even under these circumstances..........

[KidsPT]

Lupyman,

My Rheumy and Neurologist both said migraine like headaches are common in Lupus. I also have anticardiolipin antibodies and lupus anticoagulant and headaches can be associated with that too.

The Neurologists hasn't said what they are coming from for sure other than diagnosing and treating them as Migraines.

I have not been formally diagnosed with Lupus, just Sjogren's syndrome, but I have more than enough criteria for diagnosis, just no major organ involvement right now and negative for ds-dna and sm antibodies. I do have a high positive ANA and SSA, lupus anticoagulant/anticardiolipin, and thyroid antibodies along with skin and joint symptoms, and of course these headaches.

Nancy

[lupyman]

Nancy, Thank you so much for sharing your info. Many of you folks on this forum seem so on top of things. Lately, I'm having trouble thinking clearly. I don't know how you can cope with this fatigue. Its all getting very depressing. My headache woke me up again. Now the med. bills are growing. Sorry for all my whining, I know things will get better. At least its finally football season!

[Parkesy]

Hey lupyman, just thought Id write a quick hello to you on here, so many posts since I was last on here over a month ago I think lol got to love the fatigue haha!

Always nice to see more men coming onto the forum!

[lupyman]

Thanks Parkesy, I am dealing with my fatigue but have developed headaches. So far the Drs. are not completely useless, they have helped me keep my savings account from growing to large to handle. Any men out there with headache issues? Talk to me PLEASE! Thanks

[Surferboy]

Hi Lupyman, a quick question here/remark from personal experience - sometimes I feel like I have a headache but it is in fact the back of my neck which is hurting. Also, I do know that if I spend too much time in the sun I do get headaches.

could you possibly have something similar?

[KidsPT]

Hi again Lupyman,

Sorry I am so slow in replying, I missed your last post somehow.

My fatigue has gotten some better since going back up on the Plaquenil.

I am at least able to work full time but don't do a whole lot in the evenings or weekends anymore. When all this first hit, I finally had to sit down and figure out what was absolutely necessary and what I needed to cut back or cut down on as far as my time and energy were concerned. I was needing at least 10 hours of sleep at night plus a nap in the afternoon to be able to function. I ended up changing jobs to be able to schedule my time so I could rest in the afternoon for about an hour. I know not everyone is able to do that, I am in a different job now and work 10 hours M-TH and HAVE TO take an hour or so nap at the end of the day or I will start feeling really bad.

I am single and am lucky in that respect, since I only have myself to take care of/worry about, I can take rest breaks when I need to, decline or shorten activities if I want etc.... I don't honestly know how everyone with families/children manage.

I do try to prioritize my activities (ie work is important as it is my only source of income, insurance etc... so it gets pretty high priority), somethings that get pushed lower on the totem pole are housework, yardwork aside from the basics to keep it a "healthy" environment. I do hire someone to do most of the yardwork for me but can't afford both a housekeeper and yardman.

I try to do at least one fun/social activity each week to keep depression etc...at bay, but miss the days when I could get together with friends several times a week and still work full time, keep up the house and yard etc...) I have also had to budget and find less expensive outlets to socialize and the medical bills have a larger part in my budget now, but once I did that, I found my self feeling better and more in control.

I suppose this all kind of falls under time management, energy conservation and coping skills and it takes awhile to develop new strategies when you life situation changes.

Hope maybe this gives you an idea or 2 that might work for you.

Nancy

[Clare.T]

Hello Lupyman :)
I think these issues are general, commonly experienced by both men and women with lupus. This section is really meant for issues that affect men especially so why not post on Symptoms for example about the headache.

Headache is extremely common in lupus. Some questions ! ;) How exactly does your lupus affect you ? Do you have the antiphospholipid antibodies ? Are Plaquenil and Prednisone the only meds you are taking? What happened about the protein in the urine? Have you been checked for anemia, fibromyalgia ?

Bye for now

Clare

[lupyman]

Hello Suferboy, No my neck gets stiff but no pain. I try to stay out of the sun but after I am in the sun I have never noticed headaches. My Neurologist has put me on a high dose of pred. for a short time and that seems to be helping. Remember, up until 4 weeks ago I've never really had a headache. My Drs. are scaring me a bit with talk of something called CNS Vasculitus? The invasive tests they have mentioned do not interest me at all! I have a lot of respect for doctors, but to be truthful I feel like I'm kind of being practiced on. I think if I can put some weight back on I will feel much better. Thanks

[lupyman]

Hi Clare, I am also on some pain med. for the headaches. My neur. put me on a high dose of pred. and that seems to be helping. After a MRI and MRV they are looking at cns involvement. Over 6 months ago I had a second opinion Rhemy talking about vasculitis but all the tests and symptoms are sle. Now vasulitus is being brought up again.I really don't know what to do next. Some of the tests they are telling me about are invasive and expensive. My last urine test also had high protien levels but the Dr. did not seem too worried about that? Thank you all for your information.

[lupyman]

Hi Nancy, Thank you for the tips for managing fatigue. I do rest a lot but now I have been fighting some very bad headaches that have been kicking my butt. I am afraid I have got to the point where I don't know if I want to do what the doctors tell me I should do. I know they mean well but it seems like they are guessing so much. Thanks

[LolaLola]

Lupyman,
I may be telling you something you already know but don't be surprised if the high dose steroids make you feel a bit angry or manic. IT is the tablets NOT you.
x Lola