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.
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
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?
ps I read that Chemo was 5 days at a time of 15mg of methotrexate rather than once a week? Something like that ?
R there a lot of Numpties in the shire???
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.
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!!
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:(
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!
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
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!
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