allanah7 years ago

Kazakh, you sound so like me !! I felt so isolated and alone and as I was just so sore and sick I just wanted to almost curl up in a ball if I could!!! I feel it's common to feel like this at the beginning so don't feel alone. This site really helped me feel less alone and upset as people do feel better on the drugs a lot of the time X

When I started mtx it took about three months to feel any benefit I'm afraid. But they did give me a steroid injection to cover that period.

Another thing j dos was set my alarm to have my pain meds and then put on gel and went back to sleep! I got a tea maker and by the time I was ready for it the tea was ready and my drugs kicked in so I took time to move every thing before I tried to get out of bed.

Then the dreaded shower! Some days I just couldn't! But on the days I did I got a towelling dressing gown and just put that on to dry me and laid on the bed before I try to dress.

I think it's just accepting ( and no I never really have) that whilst you are flared or I'll that you need to tackle things differently. It's hard no doubt about it and I did think why me.

They increased my mtx and added other dmards to the mix and eventually I got biological drugs and I feel a big better for them.

try not to feel guilty about work , you are Ill. Take off what you need as you will feel tired and your body is telling you to rest.

Ps ask your family over , tell them to bring dinner and make you tea and I found once they saw and I admitted how ill I was they were great.

Antidepressants did help me as did some counselling and I attended a fabulous group which I always credit with getting me a bit more back to normal in Newcastle. And I called the Nras helpline just for chats who literally saved my life !!!

I hope you pamper yourself today! Put on a movie , get a heated blanket, painkillers and just chill out! Xxx

kazbah in reply to allanah7 years ago

Thanks for that. Its so comforting to know that other people understand. I will try the alarm setting tomorrow. ☺

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allanah in reply to kazbah7 years ago

Maybe worth a try ! But you know what will help you X

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Rosebaywillowherb7 years ago

Hi Kazbah,sorry you feel so bad,I to dread getting up in the morning,knowing another day of pain awaits me,been on oral steroids for a few months,and take co-codamol for pain,but symptoms getting bad again.I also live alone, have family and young grandchildren nearby,but also feel isolated and like you, withdrawing from various invites,it all seems to much effort.i try to be positive,and am most of the time, but sometimes it just overwhelms you.i haven't had methotrexate for a few years,but it didn't make much difference to me,maybe your dosage needs reviewing.seeing my rheumy next week,wonder what awaits me! X

kazbah7 years ago

Thaks for responding. It seems like we are all experiencing very similar problems.

cathie7 years ago

Just a message of empathy. I dont know what I'd do if I was on my own, my partner helps me to get going in the morning which often isnt easy. Crying on waking is a common experience and we both know now that the best thing is just to let me cry and hold me a bit.

I too have the towelling robe approach. We have a walk in shower - the only way I could manage! We have just built a small house in the mountains and it has a heat source pump which produces hot water which runs in pipes under the floor. I find that on bad days I get very shivery and cold at extremities and warm feet are so much better. Underfloor heating isnt that expensive (you can get these electric mats) and is really effective.

And that electric blanket to warm up the bed before I get in - that helps.

On being isolated, this is a tricky one. I have lost friends over the past few years while my RA hasnt been well controlled. One or two have persisted and suggest things I might join them in doing. I dont like going out of my comfort zone but I've just agreed to join a seated pilates class - more to show appreciation to my friend than anything else. I've definitely found that some friends are good at empathizing and supporting. Others are good for other things. And others still have just dropped me. Its their loss!

kazbah in reply to cathie7 years ago

Thanks for that, I've had a teary day today. X

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Cin1117 years ago

I have between on MTX since August. 15 mg injected weekly. Rheumy weaned new off my medrol to see if there MTX is working. He keeps telling me to give it time to work. #@%!? I feel horrible . burning stiff joints majority of day. I truly feel i need something else but he keeps saying it's working .. Grrrr

helixhelix7 years ago

I remember being at that stage, and it was awful. I couldn't believe how rubbish my life had become, and how much everything hurt. By the time I was diagnosed I was practically bed bound, and struggled to do anything except cry.

For me it took several months after I had reached an increased dose of 15mg of MTX for it to start working, and a while longer for the drugs to really tackle the disease. But they did. And things are ok again now. And if that can happen for me then it can happen for you too. So try to keep in your head that this is just a phase, and it will improve. And maybe ask your doctor for a steroid shot to see you though until the MTX takes hold.

kazbah7 years ago

Thanks for your positive reply x

Beaches27 years ago

Hi

I can relate to all you say as well. Diagnosed 2 years now and during those early months everything just felt like too much for me too. I was trying to get my head round diagnosis and dealing with horrendous pain and sleepless nights. I too told a few white lies to get out of social type things......no way was I up to any of that. The reason I am telling you this is because now I am on a treatment regime that is working.....yeah....took just over a year I'm sorry to say, but I had steroid injections to keep me just about functioning while waiting for something to work.

Very rarely need a painkiller or anti infl now and am getting my strength back.

It all takes time, it's horrible, but you to will get there too and start feeling like your old self again. Keep on at your rheumy team until you find something that works and in the meantime just focus on making yourself as comfortable as possible. I agree with helix, phone your rheumy team and ask for a steroid inj to help you though this bit.

Take care and good luck to you

kazbah in reply to Beaches27 years ago

Thanks for such a positive reply x

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medway-lady7 years ago

I'm so sorry you feel so low but it does take a while to get into the system and be effective and even then it does not work for all and some get unacceptable side effects. It such a lottery of chance so try to stay positive and do not be put off or feel guilty if you are unable to mix at the present time. MTX did not suit me because of side effects not sickness or rashes etc and I felt great but the hair loss was awful, so after trying it for some months I was changed to Leuflomomide which is working well and with no hair loss. So try to bear up it will improve in time and keep warm in these very cold days.

It is not easy to accept that life has changed but things will improve and to be honest do make yourself just go out for a short while as it is vital to stay active and not let matters get out of hand. RA is bad enough but you don't want become Agoraphobic as well. I'd suggest you go back to your GP and talk to him or her about your feeling which may not be down to the RA but another underlying condition such as Thyroid failure or Pernicious Anaemia both of which do affect my moods on the odd occasion.

linda-5502 in reply to medway-lady7 years ago

I see you take Leflunamide do you take it with hydrochloroquine and sulfazine ??? I ook it for 2 monthes and the good part mwas it took ALL my swelling and pain went away BUT gave me diahorea I was on the loo nearly 24/7. But I did read somewhere that hydrochloraquine and leflunamide can be adverse to each other ???

I am now on methantrexate but swellings and pain back again I too am at the end of my tether !!!!

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medway-lady in reply to linda-55027 years ago

No nothing else but MTX made my hair fall out and I think this is the one before biologics. I take it at night and no problem with the loo but have Celiac so am very careful what I eat as gluten makes that happen.

I have a very good Consultant and he is very helpful and so I do trust him. But I've had a DVT and embolisms so am on Riveroxaban which limits the choice of meds I can be given. But to be honest apart from now having the dry mouth I feel just fine no pain but often a bit tired but I've never really learnt to take it a bit easier. My hands which were the bit mostly affected are normalish now and no longer hurt so I'm very hopeful now that it'll be ok for a long while to come. I did find MTX worked but my hair loss was extreme and I felt like being on fire inside.

Leflunamide does not cause that so fingers crossed. lol xx

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babs547 years ago

Hello, so sorry to read how bad you are feeling at the moment. I am also on methotrexate and have been for a few years. It's worked really well for me although over the years I have had it increased. I seem to remember it took a couple of months to kick in. Up until August last year, when i developed pneumonia my rheumatoid went wild and I've been in agony since. I've been given hydroxychloroquine to work alongside methotrexate and hope that's going to make a difference. What I'm saying is if you get any infections apparently you're supposed to come off methotrexate so you're immune system can fight the infection. (my biggest mistake) and I'm paying for it now. I wish you well, take care. Enjoy your family, freinds and grandchildren, they'll lift your spirits😜

mauritius217 years ago

I was told between 12 to sixteen weeks whilst in the mean time I was given steroid injection to combat the pain. Kazakh it did work for me it was worthwhile waiting .good luck

Lucila7 years ago

I am 67 and live alone also. Following a severe injury to my knee, I had a massive flare which did not respond to my regular meds. I was really resistant to commencing Methotrexate, but after 6 months of severe pain, I started on a low dose which did not help. After I agreed to take the recommended dose, things rapidly improved, and within 2-1/2 months I was virtually pain-free. It helps that I have a rheumatologist whom I trust implicitly and who has always allowed me to explore other options. I'm sure the fact that it is winter where you are is not helpful. Be gentle with yourself, and accept offers of help (eg with shopping or transport). Sometimes we try to do things ourselves to maintain our independence, but believe me, generally offers of help tend to be genuine, and can help to maintain your energy levels. Good luck with it all.

Hidden7 years ago

I hope you feel better soon its hard coping with these conditions and scary when you are alone I live alone and find somedays very hard I got help from nras help line they don't make things go away but I now don't feel so alone people on here have been very supportive

kazbah in reply to Hidden7 years ago

Thanks. I find it hard to tell people face ro face how I'm feeling, but its easier on here and everyone is so supportive. X

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magglen7 years ago

Please go to your GP and ask if you can get an earlier appt with the consultant.... or do you have an RA nurse at the hospital you can phone and talk to? I think you should be noticing something with the methotrexate by now so maybe they will suggest upping the dose. The thing is that it is important to keep pushing. The trouble with the British is that we don't like making a fuss!!

You will feel so much better when you are not in so much pain. There are plenty of other medications if the methotrexate is not right for you. I started with it, went on to two others and am now on Enbrel which has done the trick

Do you have any good friends who could come in and give you a hug?

xxx.....one from me

kazbah7 years ago

I have a Jack russell called Jerry, he is good to cuddle and he keeps me warm. Im quite isolated. My 5 yr old grandaughter is good for a cuddle. Thanks for your reply. I've got the added pressure of a HR meeting on Tuesday too which doesn't help. They call it a welfare meeting. I will ring my GP tomorrow. Thanks Karen x

allanah in reply to kazbah7 years ago

Was wondering how you were. Have you got a union? I joined one and took them to meetings with me especially when I was off nearly s year. They were fabulous, on my side, and knew the law. You could also ask your welfare to meet at your house as you are too ill to get there. X hope you have a better day , hugs A

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kazbah7 years ago

Thanks. Good advice, I am in Unison so I will speak to them. I am overwhelmed by all the responses i have had. X

basketballmom7 years ago

When I first started taking MTX it took 2-3 months for it to start working; once it did start working I was in total remission. Hang in there, better times coming. Hugs!

Karen777 years ago

The worst thing about this is the level of patience required of you! MTX never seemed to work for me. I was 34 with a 3 and 1 year old and back to work full time, meanwhile my inflammation was out of control and my mobility deteriorated for 6 months. Finally, I went on health leave (2 months) and started Humira (a biologic), and only then did things improve.

Try to take each moment as it comes and give yourself as many breaks as you need. Things will sort themselves out, but seldom quickly. For some people, MTX works, for others it does not - or only in concert with other DMARDs or biologics.

Gentle hugs and best of luck to you!

kazbah7 years ago

Thanks x

linda-55027 years ago

Join the club !!! I also am on low dose of methantrexate and it does not appear to be doing a thing I do know it takes a long time to kick in nut I do think these consultants will not give you the drugs that really work due to the costs, so sad big hug xxxxx

nannyrhena7 years ago

I was on the same medicine for 4 months, it did clear up the sarcoidosis in my lungs, I also have fibromyalgia which makes me hurt, I have alot of tigger point pain, swelling and tenderness in my joints. I ended up stoping the Methotrexate lost alot of my hair ,and was moody and so very, very weak and tried. I would say that it does take awhile to notice relief, I get more relief from prednisone 5 mg. I started on 60 then 40 then 20, 10, 5. Ask your Doctor about it. Good luck ! Rhena

kazbah7 years ago

I have notice my hair is thinning and in poor condition. I am going to have it cut tomorrow see if I can get it to look better. X

linda-55027 years ago

To all you Rheumys out there can you help me gather some info. Are any of you taking Leflunomide on its own or with any of the following ??

(a) Hydrochloraquine

(b) Sulfasine

Just a quick note will suffice. I need to find out if Leflunomide is recommended on is own.

Many thanks and hugs to all