April's Blog (Part 1) - Steve's experiences of being a male with lupus

[Paul_Howard]

For this month's blog we continue to share experiences from men living with lupus. This month's first article comes from Steve. Thank you to Steve for taking the time to share your story.

I'm a 53 year old male from Derbyshire who was diagnosed with lupus SLE in February 2014. I have to be honest, I had not heard about lupus until I was diagnosed.

Now that I am more aware of lupus and the symptoms, I think that I've had several of them for quite a few years, without them being related to the condition by my GP.

Symptoms

I'm not sure all these symptoms I'm about to tell you about have been confirmed to be connected to lupus but it does make you think;

The problem I've suffered with the longest (over fifteen years) is very bad abdominal pain and back pain with it resulting in excessive wind!! I had tests (endoscopy) but nothing was found and it was put down to IB., I've learned to live and tolerate it but it is still uncomfortable to this day.

Other problems I suffer with are; swollen lips a few times and itchy, hard, hot lumps, mainly on top of shoulders and on my head/neck which I've been told resemble hives - but I’ve not been told these are connected to lupus yet.

I've also had a small blood clot at the back of my right calf, and then in April 2014 I was in hospital for three days with a bout of pneumonia and I was off work for about five weeks! My worst symptoms at present are very painful joints (mainly finger joints), thumb pads, wrists, knee joints, and painful toe cramps.

I get bad pain in the base of my heels which makes it very difficult to walk at times; most of these happen in flare ups and are not present all of the time. I suffer with migraines; mainly in late afternoons when I’m at work - I still work 35 hour a week but a struggle at times.

The most frustrating symptom for me is fatigue. When I arrive home from work I feel shattered, I can sit down to watch a bit of TV and within ten minutes I can be in a deep sleep as though someone's given me an injection! I try to fight it but the fatigue always wins. I could sleep for a few hours but still sleep all night unless a flare up wakes me up!

I get nasal sores, dry itchy eyes, and dry mouth/lips especially on waking up. I suffer with swelling and fluid on my ankles; mainly my right one. I also have varicose eczema in my right calf area which after standing all day at work can become painful and leave a burning sensation.

Medication

I was advised by my rheumatologist to try Hydroxychloroquine 400mg a day in August 2014, which I only took for about three weeks as I started getting bad headaches and feeling light headed. When I saw him again in February this year he told me to start the medication again on a lower dose of 200mg a day and to persevere with it. At the moment it seems to have settled in my system (fingers crossed). I don't want to tempt fate but for the last three weeks I haven't been falling asleep as much, but still feeling tired out.

Summary

As I've only been diagnosed with lupus for just over a year now, with many symptoms, hopefully the medication and helping myself (diet, walking, cycling and swimming) things may start to settle down.

I have to say though, after seeing my rheumatologist, most of the time he doesn’t seem interested in the symptoms that come with lupus, he just seems to concentrate and talk about joint pain. I've felt alone and depressed at times, which I told him, but he just looked at me and said you shouldn't feel depressed with lupus but you can't turn around to him and say, ‘you don't know how wrong you are’!! So you feel useless as you leave the room and he says I'll see you in six months.

Hopefully I've covered most things at the moment and I hope I haven't bored you too much.

I'm open to any questions and I also look forward to any feedback from people who can see where I'm coming from!

We'll feature another story from a male with lupus later this week. If you'd like to learn more about lupus in men, you can read our factsheet online at lupusuk.org.uk/images/pdf/1...

[smudge1980]

Hi Steve & welcome to the group. You describe a lot of the symptom's I have. And depression can be caused by Lupus. I'm surprised by your rummy. Do you c your gp? I found out that gp will deal with things like depression & give me steroid injections etc in between seei lupus clinic. They work side by side. Its a whole new way of life once you've been diagnosed with lupus. Good luck to you x

[Bronagh2015]

Hi Steve, it's great to read your story and I believe many of us have very similar ones. I too had awful hives and verrucas before I was diagnosed but thankfully after some time on medication they went away. You are learning to live with a serious chronic illness so naturally you are going to feel depressed from time to time. I have found the best way is to go with the condition, pace yourself and it will tell what you can and can't do and you learn to accept a 'new normal '. Wishing you the very best 😀

[Faye-Mc]

Thanks fkr sharing your experiences. i think you need to ask to see a new rheumatologist - someone that takes the time to listen to you! I had a horrible rheumy when i was first diagnosed but have since changed and my new one is fab!

[Hidden]

Hi Steve, I can relate to some of the symptoms which you experience particularly the fatigue and joint pain in my knees, ankles, feet and arms.

I am a 58 year old man who was finally diagnosed with SLE last September after 5 years of chronic fatigue which I put down at the time to active ulcerative colitis!

The meds I am on, Methotrexate & hydroxychloroquine seem to have broken up the joint pain problems into small flares but the fatigue is, unfortunately, still constant and severely restricts my walking distance with the need for regular stops & sometimes giving up altogether!

I have recently applied for PiP and have an assessment next week but, after reading some of the comments on this sight I am not very optimistic about its outcome as it seems the decision is made by bureaucrats rather than medical experts!

[Fighting]

I had not had abdominal pain and excessive gas until recently. I thought it was unconnected to lupus. Can anyone connect the dots for me and others who also have this problem? What part of the system is misfiring or overactive. Is it a wetness kind of issue?

[L-2day4u in reply to Fighting]

Many Lupus patients in the U.S. reported feeling better on certain antibiotics. This eventually caused one of the treatments to be minocycline with steroids. My former rheumy thought the antibiotics were needed because Lupus could be connected to "leaky gut syndrome"(in some)--meaning bugs from the intestines were spreading inflamation around the body. Some people with R.A. (another autoimmune disease) had what appeared to be "gut flora" in their joints..However, that wouldn't be the entire picture... If leaky gut started inflamation elsewhere, it didn't necessarily continue the cycle. The cause could also be different for each person. Is it crazy to think of bacteria from another part of the body getting out of control and causing SLE? No more crazy than the connection between heart attacks and mouth bacteria that was discovered several years ago or finding that H. Pylori causes stomach ulcers. With the same logic, not all heart attacks are caused by mouth bacteria (!), but it's a good idea to get any bacterial overgrowth under control. With the gut, it can help to reduce sugar, use gentle laxitives (if needed), probiotics (to restore ballance), and get tested to see if some odd germs show up... G.I. health is important anyway (and it's a possible cause when out of order). My former rheumy used to discuss all the latest theories with interested patients God bless him!

[Fighting in reply to L-2day4u]

L-2day4u, I'm not sure that I could summarize what you posted, but together with what my rheumy said, I think I'm on a good path. Are any probiotics in foods? They seem to get mentioned in many conversations. There is a similar order to caring for the septic system. Odd

[L-2day4u in reply to Fighting]

Lol, yes, digestion is something very complex that can get us down if it isn't ballanced--like a septic tank! "Probiotics" generally means the "good germs" naturally found in a healthy GI tract. Yogurt has a probiotic called "acidophilus," so there's at least one food which can (possibly) help, but there are many probiotics. If a person is on antibiotics, they run the risk if killing off the "good germs," leaving something bad like fungal/yeast overgrowth or c. difficile (a nasty germ that can make people very I'll).

If you are interested in the complex relationship between autoimmune disease and the GI tract, you may want to look up "Reiter's Syndrome," which affects people after certain GI infections ( viral as well, I believe). It's really very interesting but complex. I heard that as much as 75% of the immune sytem us tied to the gut, but I don't know uf that's accurate? After all, our immune system is also made in the bone marrow, spleen, and lymph nodes... Still, it would be great if some scientist one day identified a bug as causing all our troubles ( like h. pylori causes most stomach ulcers). Could it happen with some cases? A person can dream!

[L-2day4u]

Thanks Steve! One of the best things we can do for each other is share background and symptoms. That way, commonalities could arise that point to causes or cures...

I'm sorry for your misery. I understand it well, since it took diagnosing myself and asking for the related tests (in a very careful tone) to get a diagnosis. Before that, my GI symptoms were also called "I.B.," "heartburn," etc... When the rash for D.M. (a lupus cousin) showed up, I was more relieved than scared because doctors are so dismissive about autoimmune disorders (for the most part). After getting the ANA, EMGs, muscle biopsy, and autoimmune profile I knew mine was Lupus w. Dermatomyositis.

Most people I've met with Lupus (and family) do get GI problems (w/o IB), severe dry eyes ( with or w/o Sjogren's markers in the blood), and an odd assortment of symptoms which technically belong to some other disorder (that's due to the myth that each dtisease will behave differently rather than seeing them as connected on a spectrum). I have no Sjogren's markers, but my dry eyes had to be treated with cauterization of all the puncta again and again (to conserve moisture and avoid blindness).

Thanks for having the courage to come forward and share. It's very helpful, and you do seem to have symptoms many people have, but the establishment doesn't often tell about! You will wind up teaching your rheumatologist, if he will listen to you. Remissions happen, and I pray that's in your future soon!

[Fighting]

Thanks for sharing Steve, one of the replies to your post seems to connect some dots for me.