National Rheumatoid Arthritis Society

Bring back the sun - but keep your hat on!

I have been very surprised at the side effects of some of the medications we have to take.

I take prednisone and methetrexate but my rheumatologist only told me to take the folic acid to counteract the MTX and to watch out for the sun. This is interesting as he gives me vitamin D supplements in the winter but to get out in the sun in summer - making sure to wear a hat and cover up!

The methetrexate is also responsible for the sore mouth and mouth ulcers that many people complain of. It also causes acne, tiredness, weakness, gritty eyes, blurred vision, skin rashes.and lowered resistance to infection.

I am finding the mouth ulcers very hard to accept. The little devils appear, go away then pop up somewhere else. The soreness in the roof of my mouth makes eating very uncomfortable. Just after I started taking MTX my buttocks, chest, arms, top of my back and shoulders were covered in acne (something I never had as a young person). I was refered to a dematologist who prescribed creams to get rid of it. Both the rheumatologist and the dermatologist said it couldn't be the medication, but it is available on the internet for all to read. I have had problems with my eyes and had to see my opthalmologist. He told me that I didn't have methetrexate cataracts -yet. I was also checked in the UK to see if the methetrexate had been in anyway involved in the pneumonia I had.

Prednisone has the side effects of difficulty sleeping; feeling of a whirling motion; increased appetite; increased sweating; indigestion; mood changes; nervousness. It also increases the risk of infection. Two things that are attributed to prednisone that I can relate to are the abnormal fat deposits especially at the top of the back between the shoulder blades that is refered to as a buffalo hump.

'Buffalo hump refers to a lump of fat that develops at the top of the back between the shoulders. It can arise from a variety of conditions that are characterized by an increase in cortisol or glucocorticoid (hormones produced by the adrenal gland) levels in the bloodstream. The most common cause of elevated cortisol levels is the use of oral corticosteroid drugs, which are prescribed to treat different conditions, including inflammatory diseases.'

I can certainly relate to the difficulty in sleeping. I have had three years of disturbed nights through lack of sleep. I have previously written that I suffer from mood swings which coincide with the start of a flare. The mood swings are horrible for me and those at the end of my tirades. One thing that I have found difficult to accept is severe sweating from my head. It makes it look like I have just washed my hair and although I have some antiperspirant cream it makes little difference.

All the information is available on the internet and it is of course difficult for the doctors to give each patient a comprehensive warning on each medication they prescribe.

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18 replies

    summer
    summer

    All medications have a patient information leaflet in england.. If you read the leaflets for methotrexate and prednisolone all the side affects are listed..I will point out that cataracts are more commonly attributed to prednisolone than methotrexate,.. methotrexate can cause a red pin prick rash if you develop this stop immediately! contact gp or rhuem dept it looks like red felt tip dots it does not resemble acne. both drugs increase risk of infection!! chicken pox/ shingles is of particular concern with prednisolone.
    Lower doses avoid mood swings these are less likely at 20mg or less, every ones tolerance.drug reactions are individual I personally like to stay belpw 15mg for various reasons.. but people need enough to be of benefit .

    prednisolone is used for RA, asthma, and inflamatory bowel diease to name a few!. short courses can be used infections eg lung infection together with anti biotics.
    methotrexate.. was developed as a chemotherapy drug and 17.5 mg (children) 25mg adults is still used a chemotherapy drug.. it supresses the immune sytem.. it is used for ra, psorasis and a few other skin conditions and can be used sometimes for some inflammatory bowel conditions
    there is a lot of info. questions on here re mouth ulcers, I personally recommend difflam mouth wash and anbesol liquid or gel as that what I would use but there are plenty of other remedies!! if you look at my profile you can see me at work .. nhs large hospital pharmacy

    this is not a substitute for medical advice... dislaimer.. info only

    Sparkle
    Sparkle

    HI Ali
    Whats the red pin prick rash? Do you mean when you have no platelets and get purpurea rash from mini bleeds? Or is it something else I need to know about?
    Fiona xx
    ps I read that Chemo was 5 days at a time of 15mg of methotrexate rather than once a week? Something like that ?
    xx

    Sparkle
    Sparkle

    R there a lot of Numpties in the shire???
    xxxx

    Gina_K
    Gina_K

    Ah disclaimer Al, its a must! I thought methotrexatae used in much larger doses for cancer???
    I have a bit of bee in my bonnet re prednes as my mother in law has had very bad long term ill effects from those little red devils! They are a necessary evil for some people, but really not a long term solution, in my opinion. We all worry about the risks that anti tnfs have, but commonly swallow steroids, it is baffling to me, you can seriously damage your joints when on steroids, because you are not aware that they are at risk (my opinion disclaimer!) Also, when you come off them, you risk developing addisons disease! Not to mention the damage they do to your bones, especially us ladies of a certain low oestrogen age! especially in my opinion as a lay man/ woman if over 7.5mg used in maintenance dose.

    mand
    mand

    Hi Gina, over the years i too have a long term use of steroids, don't take any now though I'm glad to say. But you are certainly right about addissons disease i was tested just last year as they were convinced that was what i had, thankfully i didn't but found I have prolcatinoma instead.Your also right about causing problems to our joints, when i had my first operations on my feet the private orthopedic surgeon I saw in Wrexham said that the over use of steroid injections into my feet and taking then orally had contributed to my problem.
    Like you say a necessary evil!!
    Mandy xx

    Gina_K
    Gina_K

    Like ur doggie pic! I know it just seems most users not aware of the dangers! much more worried about modern meds! I too was on them for a couple of years and great bridging med and for flares but long term for RA not sure:(

    Gina_K
    Gina_K

    Carol,

    I have wondered that exact same thing re Vit D, personally I love the sun and use good sun protection. I burn alittle easier on the decolletage but no other problems. I'm on 20mgs Mtx, 200 x 2 daily plaquinil & a bi monthly humira jab! Can't believe sun in moderation can be bad for you! My opinions disclaimer as usual!

    LynW
    LynW

    Hi Guys

    Here's a link nras.healthunlocked.com/blo... to a blog I wrote a couple of months ago about the effect of RA drugs and photosensitivity.

    I can also say that the use of steroids can be extremely harmful when used in long term conditions! I have been on the blighters for 23 years in varying doses and during that time have ended up having both lenses in my eyes replaced, a combination of RA damage and prednisolone. I also have some adrenal gland suppression which means my body cannot produce enough of it's own cortisol so I will always be on a maintenance dose of pred. Fortunately I'm not showing signs of any osteoporosis but ... who knows if/when that might rear its ugly head?!

    BurgundyCoral, as regards MTX and pneumonia, having read an earlier blog, I would suggest that quite possibly your bout of pneumonia was caused by taking MTX whilst having a throat infection. MTX suppresses the immune system and MUST be stopped at the first signs of any infection. If it isn't the body doesn't produce sufficient neutrophils to combat the infection and it can spread rapidly to other areas with possibly serious consequences. Patient information leaflets usually carry a warning and certainly rheumatologists are very aware of this. Not sure why you were given MTX when you clearly you were being treated for an infectious illness. Beggars belief!

    And on we go ...another cheery day in the life of a travelling companion :)

    Lyn x

    Gina_K
    Gina_K

    Hi Lyn,

    I previously read your blog re light photosensitivity, and while I agree caution is absolutely in order, I think that a little sunlight is good for us. doctors don't know everything! nor are all reports you read totally unbiased as I am sure you are aware. Pleasure is always good for your health and as I have always said be positive & enjoy life. :) everything in moderation.
    Ps. Sorry you have long term health issues with pred use, but what could you do? There is more options now a days - well there should be!

    Philip
    Philip

    WOW Tomorrow I'm going to the doctors and giving my RA back , all this is frightening the @@@@ out of me, Sorry but this seems rather a lot to have to go through

    Philip

    Sparkle
    Sparkle

    Hi Philip
    It can feel scary trying to go through all the info. But something Ive learnt is just because one person has a given side effect from a meds doesnt mean I will. There are generic well known risks but we are all individuals with an individual body and individual responses to drugs. Hence the wide range of side effects that may or may not be experienced in each person.
    It is rubbish having to take these drugs, but at least there are more options now to control inflammation. Unlike some of the gang here who have really suffered from the lack of effective disease modifying drug options in the early years of their disease. I am glad that we have steroids they can be trully life saving in some situations. I myself have been saved by them. For example when they stopped my body from destroying all my blood platelets and bleeding out everywhere in my mucosal membranes brain, bowels etc. I do agree with Gina that they may kill you off in the end with prolonged use. So never a long, long term option unless Addisons disease or adrenal suppression or something.
    Knowledge is power so we know how to do the best we can given our individual situation. Its just sometimes a bit horrendous having to get past the initial wall of terror and panic. from then on it gets easier. You know the old saying... Darkest hour before the dawn.
    Best Wishes
    Fiona xx

    Gina_K
    Gina_K

    Don't blame you Philip! Not meaning to frighten, pred is fab drug in many ways but it is not a miracle - the info about these drugs is freely available, its not new. If its helping you, well thats what you need, like I did for the time being.
    Chin up : ) Knowledge is power!

    summer
    summer

    im using them(steroids) as treatment bridge only managed to get down to 9mg pred no mean feat wit current treatment option. bone scan ok last year eye test ok this year.
    . info on methotrexate patients should be given a patient monitoring book( purple )produced by the patient safety agency.. my abberviated info is straight from my personal issue.. if any one going to the lunch hasnt got one( its publised by the national patient safety agency )let me know. Will bring 3 0r so copies up! I make sure every patient has one at hospital when first receiving metho. for what ever use.. this booklet covers doses up to 25mg and it states this because 25mg and above is used for chemo.. no disclaimer
    www.npsa.nhs .uk is the general web site for nhs publications...
    had a friend have metho injection 25mg for molar pregnancy... this is when a foetus does not develop it is a "mass" which can turn cancerous... she couldnt tolerate methotrexate(cyototoxic) nausea, hair loss , fatigue, hair loss she had to have a special , rare cyto toxic antibiotic to remove the" mass "and luckily she is fine
    hair back, and back at work a good news story.

    summer
    summer

    Methotrexate side effects
    Get emergency medical help if you have any of these signs of an allergic reaction to methotrexate: hives; difficulty breathing; swelling of your face, lips, tongue, or throat. Stop using methotrexate and call your doctor at once if you have any of these serious side effects:

    •dry cough, shortness of breath;

    •diarrhea, vomiting, white patches or sores inside your mouth or on your lips;

    •blood in your urine or stools;

    •urinating less than usual or not at all;

    •fever, chills, body aches, flu symptoms;

    •sore throat and headache with a severe blistering, peeling, and red skin rash;

    ONLY0.2 % of people get the red pin prick rash.. rare like me alison

    emandedmum
    emandedmum

    ...sun...in Cumbria...no chance, no wonder I'm vitamin D deficient! Hope the sun is shining on you all, yet more rain here today :(

    cathie
    cathie

    I agree with you about the sun further north, but I got a very extreme sun reaction in Tenby (hardly the cote d'azur) after 30 mins sitting in the sun in April by the side of a cliff. Extreme = red reaction, followed by severe swelling so I couldnt look out of my eyes. The GP sent me to the dermatology department in the local hospital and they gave me a strong cortisol cream which eventually persuaded my face to subside. But it was very scarey. Since then I've kept out of the sun as much as possible and try to remember my brimmed hat.

    Since moving to Scotland my skin has been pretty much free of this, but on the odd day of sunshine, I'm careful.

    Isnt oily fish good for vitamini D deficiency. Smoked salmon or smoked mackrel yum.

    emandedmum
    emandedmum

    Gosh, that sounds very scary, I have to say that I've never been a big sun bather but since moving up north from Kent I do kind of miss it - it's so grey and wet here :( Am always careful when it does come out and have high factor sun cream at the ready. Very much contemplating a move somewhere warmer though....just have to convince the rest of the family! x

    BurgundyCoral
    BurgundyCoral

    Glad that so many people have commented as everyone has different experiences of the drugs they are on.

    I only see my rheumatologist for treatment and nothing was given to me regarding the medication I am on or what the alternatives are. I am so happy that I can ring NRAS for advice when needed and I do they are always happy to help and advise. I did get a book, large tome, lent to me which was all in French and I managed to get some information from it. I use the net for information and am grateful I have that.

    I eat lots of oily fish, vegetables, fruit, try to include all the range of colours in veg/fruit, am lactose and gluten intolerant so have to eat alternatives. I take calcium supplements supplied by prescription and vit D supplement in winter again on prescription. Even covered protected the sun can do it's job so try to take advantage when possible. We try to get out to places the tourists don't know about!

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