Hello everyone,
Hope you are all having a blessed day. I've been on MXT for close to 3 months. My Rheumotologist wanted to go higher on the weekly dosage from 5 to 7 but I told him I would feel comfortable at 6 pills. I also mentioned to him that I was losing hair so he increased my folic acid to 2 a day. About 2 weeks ago, I noticed some changes in myself that are somewhat alarming. The last 2 doses have actually made me feel more weighed down especially in the evening. Im not in pain, its more like I feel stiff and it takes a few for things to get back to normal. I feel tired almost all the time now and am sleeping way more than usual. I have to tell myself literally to get out of bed. I thought it could be depression but I honestly want to do things and once I'm up, I am out and about. I love life! Its more like fatigue, i get mad just being in bed but I feel like my body is calling for it. Is this normal?
For the last 3 days, add dizziness to my list of symptoms. Im even dizzy in bed. Could this be side effects of the MTX? I never felt no where near what to I feel now. Ever since I started taking medicine, I started with pain in my joints. My first Rheumotologist thought I had SS and prescribed medication for it. Don't remember the name but it started with hydro. When I initially saw her, I did not complain about joint pain only dryness. A week into taking it, the joint pain kicked in. Its as if it was triggered by the meds. I called her and she kind of chuckled it off. Now Im on a totally different medicine with a totally different diagnosis and I'm beginning to get new symptoms. The dizziness has me so worried.
I also developed Raynauds and am not sure if RA can bring that on and if any of you have it along with the disease. Should I be concerned. Don't know if the medicine is as effective as it should be but Im afraid of switching it up. Any advice is so appreciated. Thanks and God bless.
Have you told your doctor about the symptoms? You should do - just to be sure.
Hi Eileen,
Not as of yet. Wasn't sure if they were symptoms of RA or the meds. Thanks for the advice. Will give him a call today.
Its really hard when the pain is sore and everything seems to centre on pain and discomfort. The other annoying thing is when you have your blood tests ( mine are monthly) and all the results show all meds are working well. I am trying to source a more hollistic p/ killer that isnt legally available in this country but is in USA. Great reviews on its pain killing properties and its not bad for the stomach like codeine , paracetomol etc.. Its oil from a certain plant that some ppl smoke to get a high but the oil doesnt do that but dramatically helps pain and has othet qualities. The hardest but in my mind the most important thing is keeping yourself going and as active as you can manage. I work in building trade (self employed) dont do as much as i used to but same mentally so keeping mind on other things so not dwelling on pain etc, easy to say i know but very important. Good luck, keep well and dont stop fighting either the disease or the doc until you get what you want.
Regards Gaz
The dizziness should be reported to the doctor. It could be a side effect of MTX but I don't know. I was taking MTX and got up to 6 pills weekly but too many side effects. It is trial and error til they find the right med for you so it is quite discouraging til they find what works. Hair loss is a problem with MTX for sure. I took folic acid but just the day after MTX but others have written daily dosing. I also take biotin supplement for hair loss since it is supposed to help. I think it helped but then I am no longer on that drug
I have a big problem with feeling exhausted most days. hard to get out of bed, feeling time for bed by 5 pm but I do force myself to stay up til 8. Luckily it's not every day but it is frequent
Also other autoimmune disease can occur with RA. I do have 3 autoimmune conditions. Not sure if Raynauds is associated with RA.
Contact the doctor and report your new symptoms. I hope they get this sorted out for you. God Bless you too! It's hard but try and stay positive and keep busy with whatever exercise you can tolerate--I like walking, yoga and gentle exercises. Of course the dizziness has to be resolved first
Thanks Gloria for caring enough to give words of encouragement. I will be speaking to my doctor. Everyday I wake up and hope this would go away. I continue to do as much as I can but usually i am in bed at 7 which for sure not my norm. I do hope i am able to get the right treatment but most of all that there is a cure for all autoimmune illnesses. Blessed evening to you.
Thought both of you might be interested in this:
https://rheumatoidarthritis.net/medical-conditions-occurring-along-with-ra/raynauds-syndrome/
There is a higher rate of Raynauds in RA than the general population - the article explains why they think this is the case.
"I continue to do as much as I can"
that may be why you are so fatigued and have to go to bed very early. Often planning a rest earlier, before you get to the state of collapse helps - the fatigue is much the same for all autoimmune disorders. Often accommodating that means the total useful part of the day is longer. You have to change how you do things a bit too and then you can often do things you think you couldn't...
This is a link to a post on another forum altogether - but it has some links gathered within it that are very relevant to anyone with a chronic autoimmune disorder. Some are fun, some are serious but all are useful. You have to learn to pace yourself - it makes your energy go further when you do and is almost like having a couple of extra spoons! And you have to learn how to tame the gorilla - or at least what to do that doesn't poke it awake and mess up your day/week.
https://healthunlocked.com/pmrgcauk/posts/135650532/fatigue-pacing-spoons-and-a-gorilla...
Hi, I myself could not tolerate Methotrexate only on it a week and ended up in A and E, not to be scare mongering I think Methotrexate is notorious for side effects, some people seem to cope ok, the thing with medications you can just develop an intolerance to them, hope you get sorted.
Thanks Martin, much appreciate you sharing your experience with the meds.
Thanks Eileen your links have been very helpful as well as your advice on how to manage fatigue. I will try to pace myself. Hope you have a great day. God bless
This answer is not directly related to your question.I understand what it feels when you are in extreme pain and watching everyone doing there daily work with great ease.So I found first thing we need to fight is depression.So please develope a strong will will power first.Try to think positive.I know it's very easy to say but it can only be sensed only if is going through it. I don't know what is your age.But would recommend you try to do light exercise after consulting your doctor.For me swimming helped me a lot especially backstroke.Reason why swimming is helpful in this case because your joints are free in water but your muscles keeps on working which helps strengting your muscles.Please watch videos to stay positive.
Hoping that one day when I feel low someone will help me recovering from it.
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When I was on methotrexate my hair got very thin and I’m no longer on it but now I don’t have that dizziness anymore and I was scared because I could me laying down and be spinning it was the best thing to get rid of but now I’m a walking pain ha avi get knee replacement in may and they don’t want me on ANY ARTHORITIS MED TO HARD TO GEAL
Thank you , Eileen
I have a book on RA called the autoimmune connection which is quite informative. It covers many autoimmune conditons and I just looked up the findings again. It lists 7 other diagnoses that can accompany RA and I see Raynauds listed. However I have 2 other autoimm. issues and they are not on that list so perhaps it's just a general analysis Thanks for your post though. It is helpful for all of us to know
Hello
Ive been on MTX for about 13 yrs along with humira and havent had any problems or side effects. Sorry to hear about your problems. I guess RA and the meds that go with it affect different people in different ways. I wish you well.
Thank you Captain Jack. I do appreciate your words of encouragement. Hope I can repay if ever you need words of strength. Have a blessed day
Hello there Captain Jack
I also have a lot of pain with RA and totally agree with you regarding keeping going, keeping your chin up and all that malarkey. I'm 60 have had RA for about 16 or 17 yrs. On decent meds but the pain does hurt. I'm a self employed builder and i still go to work, have time off now and again and i do more delegateing of jobs than i ever did but i still do stuff. The point is keeping your body as active ad you can and when your minds occupied you stop concentrating on the pain and you become more positive. Its not easy but anything worth anything never is. Cheers now, keep on keeping on.