Fungal skin and tiredness

General
1

I am on 6 MX a week and folic acid. I have been taking the MX since February. Three weeks ago I had a virus, really sore throat and then chest infection. I also had a boil on my backside and I have acquired various areas of fungal activity on my body. The doctor gave me antibiotics for the chest infection and the boil, and cream for the fungal infection. Is this par for the course with MX? Also I have days of overwhelming tiredness when I cant seem to shake myself out of it. I have also noticed a decline in my spirits. When I was on Leuflonomide I was very happy. I take prozac for depression and I would say that I am feeling is depressed. Any suggestions as to what has changed? I have been on prozac for 4 years and been great up until now.

I often feel a bit of cheat, because I do a lot of physical activity (I have two horses), but I take 6 co-codamol every day and have done for the last 3 years. If I did not I would not be able to move my hands at all. I find it so hard to be clear as to how I am feeling. I seem to switch between managing really well and then finding even making a cup of tea an effort. Is the MX not working? I am now getting more joint pain in my feet and knees. I also find people dont really understand. They think I look O.K and so I must be faking it. Any help greatly appreciated.

2

Dear Sweetpea,

You have come to the right place with all of this, what one does not know, others will. I took MX for 4 months, either it made me worse, or the disease progressed substantially. For the grand finale, I got blisters all through the inside, and all over the outside of my mouth, I woke up and just flipped out! Called my GP, who is always calm, and he got a little hot saying "What the hell does he have you on this for, it's a cancer drug, you need to be on Enbrel" He named another and I can't think of it to save me right now.

I was scheduled to see the Rheum at the end of the week, I told him right off the bat that it was time for something else, I had already started with Sulfasalazine for 3 months made me no better and gave me a stomach ulcer to boot. The Rheum said it was caused by the MX.

He told me that I had to understand that Insurances require that he start the med selection with what he called the benign drugs, before he could go on to the Biologicals.

As you go through here you will find all kind of stories about this med. I think it was Seenie who called it 'The Methotrexate Chronicals'!

There are a few people who are helped by this, and some who take it in combo with other drugs. I am not a medical professional, and do not know too much about you, but I think maybe you have to get a bit stern with your Doc and tell them this med is only causing you harm. You will have to clear this up before you can go on a biological, they don't even want you to have a hang nail when you start those because of the way they supress the immune system.

Some of us take narcotics, some don't, some take them like clockwork, some only with extreme pain, we surely will not judge what works for you! They keep me from crashing out for long periods of time, they keep you moving. It is what you tolerate best!

Sweetpea, we all get treated the very same way, it is an aim of Ben's Friend's to raise awareness of this disease, plus we just had an International Autoimmune Arthritis Movement day. You can access this group and join this, and other foundations, such as the National Psoriatic Arthritis Foundation.

The best thing that has come about with this since I was diagnosed is Phil Michelson doing the Enbrel ads, and getting the Enbrel, I have taken 5 shots now. It really has helped me, I am having a flare from having my Grandson at at Carnival on a very cold, damp night and that damp just seemed to soak into me.

Hope this was a help, more replies will follow! Talk to us anytime!

SK

PS Always remember that there are brilliant scientists busy at work to bring us new meds, there are some that were just approved or some that just went into or came out of clinical trials, so NEVER give up hope!

3

Sweetpea, I just came back to add something and somehow erased the entire response, did you get a chance to read it? Let me know, please.

SK

4

Oh good, it reappeared! What I wanted to add is that the tiredness, exhaustion, malaise, is all part of this, we all suffer it, it is a balancing act that sometimes works and sometimes doesn't but your body will require more rest, some days you will need to sleep, because some nights you just can't!

5

Hi Sweetpea and welcome to our group! First of all, my graduating (Psych) thesis talked about people saying, "But you look so good"! To this day, part of me wants to hug them for thinking I look good when I feel like butt, lol, but most of me wants to slap them! They are so clueless! Most people do not have pain as severe and "chronic" meaning forever, as we do. I believe they think they are saying the right thing to make us feel good.....and some do it because they think if you get up, put makeup on, fix your hair and wear something nice(I sometimes dress up more than usual on my VERY bad daysjust to get thru the day), then you can't POSSIBLY be as sick as you say!Some people are just plain mean! For those who mean something to me, I do try to explain what's REALLY going on to update them and help them to understand. For those who are just not too bright or mean nothing to me, I say "I am hanging in there" and walk away. I learned very early on in my education that negative people or people who aggravate me are NOT what I need in my life! We need positive people around us who make us feel good/happy/peaceful and whom we can really tell our true feelings to. The negative/bad people are toxic and they are the LAST things we need in our lives! Stress happens to ALL of us but we can control the people we hang out with....family or non family. WE make that choice!

As far as your Prozac and Mth go, often our body builds up an immunity to drugs that used to work for us. Our condition changes often and sometimes meds need to have their doses changed or a different med all together. Infections happen easily to people with autoimmune diseases and Meth, Enbrel/Humiratype of drugs make our immune systems even weaker as they try to help our pain. It's crcial to find a good doc...I know it's taken me YEARS to do that but I finally have a rhumy I like and trust even though she does not own a magic wand. I can talk/vent to her and I tell her when unusual things are going on and we review my meds/symptoms and at that time, she makes changes if she thinks I need changes . Also, good fiends to talk to...even if you have just 1 special person and this chat group is so important because we care and will listen! And we don't have to tell our spouses/partners etc, the same things over and over again! Counseling is also a good route to go....but make sure it's somone who knows about chronic illness and that you feel comfortable with her/him. If not, there are many other fish in the sea! Keep looking!

SK thought we lived near each other but I think she's mixing me up with someone again, LOL! I am from northern Vermont and you are from South UK?? Is that correct? I don't know what yur weather is but I know that when we have our week of summer(LOL! they are short here!), I am careful to wear a hat, sunscreen and stay in the shade. I do what I can. The sunand heat makes me really sick and I am not supposed to be in it anyway, having Lupus. But for any of us, too much sun can make us feel worse...and so can damp cold. Taking a rest every day is important cause most of us don't sleep well. I am up more than I am down at night because I cannot get comfortable and sleep meds are not my friend, due to a weird gene I have. But if you aren't sleeping well, it's going to make your symptoms worse. S,even you don't sleep ing theay, put your feet up for an hour and rest!Talking to your doc about Ambien or Ambien type drugs would make you sleep better and perhaps more rested during the day. I know you have horses and horses mean hot sun, and LOTS of work....my daughter has 5 horses and 2 cats They can bring you SUCH joy as our other pets do...I have 2 dogs and cats!They are companions! But also work...esp horses! So I am hoping you have help with some of these hard chores? Barns and animals can give us skin issues sometimes..flea/tick bites..so be careul...but I KNOW you know that! Anyway SwetpeaI just meant to write a short hello but I guess I am chatty Judy today, LOL Please know that we are here for you...even if just to vent. We really "GET" it and I promise I won't EVER say..."But you look so good"!If I do you can say "Bite me" to me,LOL! PLEASE forgive the typing. My keyboard always misses keys and I am too o whipped to go back back to check. I figure you guys will figure out what I am saying!

I hope you talk to your doc and fiure some things out SOON!

Warmly,Judy

6

Thank you so much for your reply and welcome. I see my consultant in two weeks time and was afraid that he wouldn't believe me when I said I didn't think the MX was doing anything good for me (the Leuflonomide didn't work much either). I had 7 years of being fobbed off by the G.P until I saw this one consultant who did an ultrasound of my hands and gave me my diagnosis (in 2011). Why hadn't anyone done that before? I have had psoriasis since I was 13 (I am now 57) and he was the only one to pick up on it. My skin has never been so bad that I have gone for treatment for it. I have always just put up with it, so I never thought to mention it when I was repeatedly told there was no rheumatoid factor showing up in my blood tests, and would I please go way and keep taking the pain killers. I had 3 good years on Ibuprofen. I then had a terrible stomach reaction and could no longer take it. Then I started getting trouble with my knees and these awful days when I just didn't recognise myself. Now I know these were flare ups and there was help out there. I have had two lots of steriods and 2 steriod injections in the past 12 months and it was only then that I realised I had forgotten what it was like to feel 'normal'. For so long I have felt awful most of the time that after 3 days on the first steriod course I was running round the garden laughing with joy. I sat on the lawn and got up again 'normally'. I hadn't been able to do that for at least 2 years. How I feel on the steriods is the only barometer I have to what is normal. I feel confused most of the time as to what is going on in my body. My memory is terrible and I no longer feel capable. I live on the pain killers because I try and fight it and do all the things I want to do.

My experience of health care in the U.K. at the general practioner level is poor. My consultant is lovely but I find it so hard to trust the system when I know that economics are paramount. I feel that because I am not dying I shouldn't expect too much.

Thank you so much for your advice. I think I know in my heart that I have to stick up for myself and say that I believe the MX is causing me problems and not really benefitting me either. It has really helped writing this, and claryfying things. Sorry to go on. I will let you know what the outcome of my appointment is. I hope you feel better soon. Every good day is a blessing isn't it.



SK said:

Oh good, it reappeared! What I wanted to add is that the tiredness, exhaustion, malaise, is all part of this, we all suffer it, it is a balancing act that sometimes works and sometimes doesn't but your body will require more rest, some days you will need to sleep, because some nights you just can't!

7

Many say that the Mtx can take quite some time to kick in. I'm on my 8th or so week and was just bumped to 8 tablets from 6 this week because it was not doing diddly. I take Tramadol pretty regularly unless I've got driving to do. The fatigue is likely a combination of the systemic disease, and the mtx. I am most whooped 1.5 to 2 days subsequent to taking the Mtx and just plan my week accordingly. Tiredness and lack of ability to function normally can definitely add to a depressed mood. Because the pains can come and go, people don't understand. We do, so good for you for posting. This is a great support forum. We're here for you. Hugs and prayers your way.

8

Hello again!

Sorry about location, Judy, right person, wrong area, I'm having a day, yet another bad storm building, after a trip to the Grocery store, bending an lugging, I'm even worse!

Sweetpea, you have to be your own advocate, start taking notes to present to him, tell him problems, write the most important questions, any additonal symptoms as this will help him/her with your treatment. By all means if you feel you are worse, please tell them, they cannot help you if they don't know everything going on with you. I now give mine notes to just tape into the records, at least for my GP.

More and more people will respond to this, give you even more good advice, listen to you and certainly understand. Believe me. we all understand.

As for people, sadly you have the right idea, so does Judy! It all changes, and so do you. Please feel free to go over all of our talks and respond, or we can keep this dissertation going! HA!!

I hope that you are feeling a bit better, stay in touch!

Big hugs,

SK

Sweetpea said:

Thank you so much for your reply and welcome. I see my consultant in two weeks time and was afraid that he wouldn't believe me when I said I didn't think the MX was doing anything good for me (the Leuflonomide didn't work much either). I had 7 years of being fobbed off by the G.P until I saw this one consultant who did an ultrasound of my hands and gave me my diagnosis (in 2011). Why hadn't anyone done that before? I have had psoriasis since I was 13 (I am now 57) and he was the only one to pick up on it. My skin has never been so bad that I have gone for treatment for it. I have always just put up with it, so I never thought to mention it when I was repeatedly told there was no rheumatoid factor showing up in my blood tests, and would I please go way and keep taking the pain killers. I had 3 good years on Ibuprofen. I then had a terrible stomach reaction and could no longer take it. Then I started getting trouble with my knees and these awful days when I just didn't recognise myself. Now I know these were flare ups and there was help out there. I have had two lots of steriods and 2 steriod injections in the past 12 months and it was only then that I realised I had forgotten what it was like to feel 'normal'. For so long I have felt awful most of the time that after 3 days on the first steriod course I was running round the garden laughing with joy. I sat on the lawn and got up again 'normally'. I hadn't been able to do that for at least 2 years. How I feel on the steriods is the only barometer I have to what is normal. I feel confused most of the time as to what is going on in my body. My memory is terrible and I no longer feel capable. I live on the pain killers because I try and fight it and do all the things I want to do.

My experience of health care in the U.K. at the general practioner level is poor. My consultant is lovely but I find it so hard to trust the system when I know that economics are paramount. I feel that because I am not dying I shouldn't expect too much.

Thank you so much for your advice. I think I know in my heart that I have to stick up for myself and say that I believe the MX is causing me problems and not really benefitting me either. It has really helped writing this, and claryfying things. Sorry to go on. I will let you know what the outcome of my appointment is. I hope you feel better soon. Every good day is a blessing isn't it.



SK said:

Oh good, it reappeared! What I wanted to add is that the tiredness, exhaustion, malaise, is all part of this, we all suffer it, it is a balancing act that sometimes works and sometimes doesn't but your body will require more rest, some days you will need to sleep, because some nights you just can't!

9

Sweatpea says, "I realised I had forgotten what it was like to feel 'normal'. For so long I have felt awful most of the time that after 3 days on the first steriod course I was running round the garden laughing with joy. I sat on the lawn and got up again 'normally'. I hadn't been able to do that for at least 2 years. How I feel on the steriods is the only barometer I have to what is normal. I feel confused most of the time as to what is going on in my body. My memory is terrible and I no longer feel capable. I live on the pain killers because I try and fight it and do all the things I want to do."

Oh boy, you've put it in a nutshell! Yep. We forget what normal is and the pain becomes so "normal" that we say we're having a "good" day when we're still in a lot of pain but the worst pain isn't masking the lesser pain (thanks to SK for making that point clear to me last week.) I know where you're coming from because I FINALLY got some muscle relaxants and tramadole and used both last night and today. For once, my mind felt like it had relaxed and "slept" well. Body still hurts but some of the pain was hidden for a while, which was lovely. You're right, it's incredible when you can suddenly "do" things again, like getting up off the ground!!! after not being able to do it pain free for years.

As others here have said, it all seems to be normal and par for the course of the disease to feel the pain, depression and fatigue. But you know, anti-depressants CAN stop working after awhile. It's happened to me. Maybe it's time for your dose to either be upped or changed. I'm on something new now after years of just letting my depression sit and fester. It feels great to have that part of me working well, so that the disease doesn't eat away at my mental health. I do suggest that you visit your doctor and talk about the depression issue.

Also agree that you need to tell your doctor about the MTX seemingly not working. Don't give up on trying! I know it's tempting when you feel that the doctors don't care but you'll NEVER get help if you don't advocate for yourself. And if you DO advocate for yourself, sooner or later you'll get somewhere with your questions. Good luck and keep us posted!

10

Hi,

I have been on MX (with the added sulfasalazine/meloxicam) for almost 2 years now, and to be perfectly honest I think this drug is disgusting !

I am now 22 but started with this disease when I was 16-18 (first years was undiagnosed, I'm a professional Ballet dancer, so it was thought to be just a tonne of injuries!). At first I was so in need to get on MX so I could start walking again etc etc. However now after SO many infections ( one being a major fungal infection ) Iam tired of it.

Within these 2 years my dosage has been changed nurmerous times starting with 10ml weekly and now I'm taking 25ml. I would says a big yes to either changing your meds or talking about a dosage change...

About the tiredness... sometimes I feel like I could sleep forever... and dont really have a "good" reason for it. No matter the pain or the infections that are in my body, my biggest aim is to continue laughing and not lose myself, so therefore people get really confused when at a certain point I have a burn out, for several months! I was also not sure if the tiredness was just me loosing my youth to this condition, or I was just imagening it... however after months on end of trying to stay on balance and failing I realized it must be the meds!


My next step is to start TNF blockades, the British goverment has approved that I start to use them. I'm a little scared as its an even higher drug than the MX, but it gives less sickness and hopefully more of my life back.

I hope your appointment goes well !

Take care.

11

Sarah, I don't know what's up but I can see the first line of your reply in my email but when I come here to read it, I see nothing at all. Is anyone else having trouble accessing Sarah's response? Maybe it's just me?

12

Sweetpea,

I meant to ask you what type of fungal infection you have, if you know. I guess these things creep up on us with the Autoimmune system all over the map, but I see you were given cream, so it sounds under control.

Could I ask why you are not still on Leuflonomide if you were very happy on that, a side effect show up?

We haven't heard much from you, please come back when you can, we are all here for you!

SK

13

Sorry to be a while replying, we are having some freak weather here and I have been busy outside. First up, thanks to everyone who has been in touch, their words have been helpful and uplifting. What a lovely group you have going. I am working my away around using the site and am not sure if I am doing it correctly, so hope this reaches everyone.

Secondly, especially for SK, I am feeling better today, that is, more focused and thinking clearer. I think that is what I find the hardest with all this. That is, the feelings of inertia and not being able to rally my body into some sort of action. It feels like I am dragging concrete with me, everything is so much effort. Does anyone else feel like this? I expect you do. Anyway today I have more 'get up and go'. I dont know what sort fungal infection I have. It is irregular dark red patches of skin (no flake) in various places. It is on the retreat I believe, maybe my body is fighting back. I was given Trimovate cream but have stopped using it, because it was making the skin sore. I have made an appointment with the GP for next week to discuss. My rheumy took me off the Leuflonomide because he felt it wasn't doing anything. Certainly I had as much inflamation as when I started on it. Fortunately I saw him for my review when things were particularly bad. I felt it had given me slightly more mobility (between flare ups) but overall not much was happening. I did have some hair loss but overall no bad side effects. However I was very jolly whilst on it and I have been less so on the MX. What with this current skin thing and feeling more down I would say the MX has been less pleasant. Is it more toxic than Arava? It is so hard to judge what is working and what is not. Steriods definitely work, but of course, I dont want to have them too often (I had weight gain on the last lot).

I will upload some pics of my hands for you all when my husband returns (he works away a month at a time). I have found other peoples pics very helpful.

Hope all is well with you and thank you so much for caring. Sweetpea.

xxxx



SK said:

Sweetpea,

I meant to ask you what type of fungal infection you have, if you know. I guess these things creep up on us with the Autoimmune system all over the map, but I see you were given cream, so it sounds under control.

Could I ask why you are not still on Leuflonomide if you were very happy on that, a side effect show up?

We haven't heard much from you, please come back when you can, we are all here for you!

SK

14

Sweetpea,

I also wanted to tell you that my Rheum, who is also a University Professor, told me that sometimes the bloodwork just never shows up, yet the disease is there, by the rash, joint swelling, pitted nails,tenderness and the dreaded joint damage. It can take an estimated 7 years in most cases for this to be detected. That is about the amount of time it took me to get to the right Dr and get the right dx.

When we have something all of our lives, it is normal to us, we deal with it if we have to or if it's something like my pitted fingernails, you have no idea what it means. I do not have psoriasis, mine was a car accident that I could not get over, it made no sense to anyone. Just because I have never had psoriasis doesn't mean I won't get it , it could take 20 years for it to appear, and it may never, ever show up! Of all the research I have done, I just now came across that tid bit!

I hope that we have not bombarded or overwhelmed you, we are just reaching out with concern.

I also want you to know that a huge percentage of us have at one time or even still continue to talk to a professional Psychologist, and it is because of the frustration, the anger, the 'hurry up and wait' of the trial and error med situation, the inablilty to have normal and restful sleep, and the chronic intractable pain and it's unpredictability! This disease buckles the very best, and strongest of us all! Anyway, it is okay to talk to a professional, one who is trained in chronic pain is a real gem! Do not be ashamed!

Please know that we are here for you, Ben and his friends began this haven for us, please come to us and join us. I think that right now you are just trying to go through the information and soak it up. I hope it is helpful, and I hope that you are even able to have a laugh or two. It is amazing that we still have this ability!

You can click on our pictures and it will take you to our page, you can read more about us through our stories, we have bared our souls too!

You will be in my prayers, I have said them several times tonight in my attempt to sleep, now that it is dawn, I surely hope sleep will come to me soon! BTW, always eat with a med, even if it's just a cracker!

SK

15

I have been unable to see this response either. Just spending a few moments at the computer here trying to find my way around. I am going around and around!!!. Thank you for your kind words Petunia Girl. It is great to share. x x x

Petunia Girl said:

Sarah, I don't know what's up but I can see the first line of your reply in my email but when I come here to read it, I see nothing at all. Is anyone else having trouble accessing Sarah's response? Maybe it's just me?

16

Hi Sweetpea,

Today is finally a beautiful sunny day here after weeks of storms, I am also enjoying the PEACE, as my very energetic grandson decided to go home for "four days" before returning to me again, he had just been here about 8-10 days!!! I lost count after a few!

We all know about the 'dragging concrete, or feeling like lead', the exhaustion is sometimes so pronounced and yet there is little sleep. This is a lot to take in, to process, an then it's where to go and how to get there questions to consider in the meantime. Just being able to let go and unburden some of this is such a relief, and if you haven't learned as yet, you will, that you have to rest when you can.

I hope that you are feeling just a bit better and feel at home here and will reach out for us when you need us, doesn't have to be about desperation or pain, can be about anything.

SK

17

Hi Sweetpea, how are you feeling? Not sure if you are a super quiet shy one, or if your hands bother you too much to type a lot. We are glad to have you here with us either way. Wishing you a good day!

18

hi...I am taking MTX and have been for 20 weeks now...need to find an alternative as iam sooo tired all the time, I also get sore throats and painful gums. also makes me feel depressed. I know exactly how you feel.

19

Hey Sweetpea, just wondering if you got to the Rheum yet? Been about 2 weeks, let me know please! Thinking of you!