So done with this

[vicky561]

Hi everyone.. I was diagnose with Giant Cell Arteritis in Sep 2018 so I haven't had it for long it feels longer I hate the headaches,tiredness,body akes,and the weight gain from the prednisone ugh! 😢😢

[DorsetLady PMRGCAuk volunteer]

Hi

Sorry to hear you feel in such a bad way - tiredness and weight gain is normal with illness and drugs, but I am a bit concerned about the headaches & body aches - the Pred should be dealing with those. What dose are you on now ? Starting dose? Are you ignoring the fact you have a serious illness and not pacing yourself by trying to carry on as normal?

Life will get better- and it could have been a lot worse. Believe me - been there!

Have a look at this -

healthunlocked.com/pmrgcauk...

[vicky561 in reply to DorsetLady]

I started with 80mg of prednisone and now I'm on 20 mg and also taking shots of Actemra once a week. I try to do what I can but I'm so tired and the headaches are something else 😢😢

[PMRpro Ambassador in reply to vicky561]

Did the headaches go away on the 80mg pred? If so, at what dose did they return?

[DorsetLady PMRGCAuk volunteer in reply to vicky561]

Think you need to increase your Pred - your GCA, if that’s what the headaches are, is obviously not being controlled - so you are getting the worst of both worlds- and not being protected properly.

You need to speak to doctor.

[vicky561 in reply to DorsetLady]

I will thank you😊

[Mobley678 in reply to DorsetLady]

Hi DorsetLady I just read your attached article, New to this and such a shock to read along with you saying 'are you ignoring you have a serious illness' but thankful I did read it and now realise I do have a serious illness. So awful and so very hard to come to terms with after a lifetime of eating so healthy and living a healthy lifestyle to still end up with this illness! Yes need to rethink all...Thank you

[DorsetLady PMRGCAuk volunteer in reply to Mobley678]

Yes it is a serious illness, but with the correct level of Pred and a few adjustments to life - you will get through. It’s not life threatening like cancer, but it is life changing - but that doesn’t mean you can’t still enjoy life.

I don’t think it takes account of your previous lifestyle - other than if it was stressful - that certainly does make a difference - as most of us on here know.

Continue with your healthy lifestyle (maybe moderated a little - muscles aren’t so resilient) and healthy eating - and you get through. Just don’t be in too much of a rush - PMR and GCA take their own time - so you need to go with the flow!

Take care

[kellykel]

Vicky, oh - my heart goes out to you. This is an awful disease. I suffer as well. I am 3 years in and even today I wake up completely shocked at the level of pain, body weakness, and terrible side effects of prednisone.

It’s baffling to me to have a disease no one can cure.

I’m glad you at least have a solid diagnosis. I don’t as have been in prednisone so long a biopsy is not worth doing. This is a catch-22 as insurance needs a good primary problem code.

At first I gained weight too, then slowly learned to cut carbs and sweets. Still often fall off that wagon.

Still, I hear you how helpless I feel when I look in the mirror and my face is so swollen and chubby.

I am not able to do much. How about you? How bad is everything? Pain levels? Steroids? What dose are you on?

I appreciate your note. Sharing the sometimes despair and overwhelming consequences of having this is helpful.

I’m so sorry you are having to do deal with this.

[vicky561 in reply to kellykel]

Thank you.. I'm on 20mg of prednisone and I also take Actemra shots every week. The headaches are the worst for me they wake me up from sound sleep...😭... i also hate the puffiness in my face. I'm so glad I found this group at least I will have people who know what I'm going through.... Thanks again

[fmkkm in reply to vicky561]

Hi Vicky,

Please listen to DL and PMRpro, they are experts. The headache points to a bigger problem of inflamed arteries in your head. If you are on the right dose you should not get a GCA headache.

Also-from me, it gets better. The first year is physically and emotionally taxing. You just have to go with it, eat a clean diet, get fresh air, try to go for short walks, nap, de-clutter your brain.

Stay close here and let us know how you do 💕fm

[PMRpro Ambassador]

I echo DL's comments - if you still have headaches that suggests you may not be on enough pred or that you are not treating the GCA as being a serious illness which is being managed to prevent you going blind with a high dose of a serious medication.

The weight gain can be helped to at least some extent by cutting your carb intake drastically - and that also helps reduce the hunger pangs that are also so annoying.

[alvertta]

Me too. Diagnosed in October 2018. Hate feeling off all the time. Too tired to do lots. Currently on 35 mg prednisone

[alvertta]

My naturopath suggested to limit sugar and gluten. Also no alcohol. I find that helps.

[SheffieldJane]

You’ve had great advice so I’ll just send you a hug. Try the mantra “ every day, in every way, I am getting better”. It will you know.

[Sho-Sho]

It's such a difficult illness to cope with - nothing prepares you for the fatigue, it's overwhelming, the overall feeling of unwellness and then the side effects of high steroids. They make you hungry, so I was always eating, too tired to take exercise, no energy to do anything, plus the fat face, a lot to handle in the first six months. So took lots of advice over having the right diet mainly cutting carbs and sugar, tried to walk for 30 min a day, rested every afternoon and accepted I was ill.

Great advice from DL and PMR pro

We'll get there in the end!

[GinnyMa]

Hi Vicky,

Be patient with yourself. I am concerned that you still have headaches and think you should consult your doc. I am almost 4 years into my diagnosis of GCA, and have had one relapse. After a lifetime of good health, I found it extremely difficult to not be. Weight gain-yes...tiredness - yes. But I have concentrated on taking care of myself, which has been difficult after a lifetime of taking care of others. I have watched my diet and nutrition very carefully. I have walked daily, taken a senior exercise class to firm up sagging muscles, napped every afternoon, and even taken trips from the U.S. to Italy, Ireland, and Spain. Three months ago, I started to feel like my old self, having the energy to do all the tasks that have been on hold for 4 years. I feel wonderful again. May I suggest that it is time to concentrate on yourself and remember that things could be worse, as there is an eventual end to this.

[vicky561 in reply to GinnyMa]

Thank you.... it just so hard at times😟

[Sho-Sho in reply to GinnyMa]

Can I ask you, do you remember how you felt after two and a half years into your GCA , and what dose of pred you were taking at that stage.

I still feel exhausted and if overdo things feel really unwell, not headachy, just grotty. I have been on 7.5 for nine months now as haven't felt good enough to taper. I am massively encouraged and delighted for you that, at last, you are feeling like your old self - gives me hope.

[GinnyMa in reply to Sho-Sho]

I used to keep charts of my dosage but recently threw them out (feeling near the end of it? ), but I remember 2 years ago for a particular reason. I was at a very low dose and putting pencil to paper thought I would be off prednisone by that Sept. and so I planned a trip with a group that was going to walk 65 miles on the Camino de Santiago. I anticipated that the trip would be a reflective journey (no, it was hard) and a journey of gratitude. By July of that year, I was down to 1 mg and the headaches returned...doc put me back up to 10 mg and suggested that I taper 0.5 mg every 2 months.....very slowly!!! No more flares have happened, and I anticipate being off prednisone by July..hopefully!

Perhaps 7.5 mg is too control the symptoms. Keep trying to control the things you can control (like diet, exercise, resting) because only prednisone can control the GCA.

[Sho-Sho in reply to GinnyMa]

Thank you so much for that , really helpful.

[Sho-Sho]

Can I ask you have you had any side effects from Actemra?

[vicky561 in reply to Sho-Sho]

I have had a rash round the injection sight and felt really tired after i don't know if this is a reaction or not but my doctor knows about it

[Sho-Sho]

Thanks.

[Devonspinner]

Oh you, I know how you feel. I was diagnosed with polymyalgia last April then GCA in November last year. Yes I hate my fat face and I am 10 lbs heavier than this time last year. Keep smiling xx

[Zozoi]

Hi Vicki,

I was diagnosed with GCA back in Octobre and only discovered this marvelous community a few weeks ago. And the precious support put a stop to the isolation. My husband and sin have been very supportive but sometimes it is good to be in touch with people who are in the same boat. I am not an expert yet and also everyone is different but I agree that the headaches you are experiencing does not seem right.

The minute I knew I would be on the Pred, I cut out completely salt, sugar, gluten and dairies, strictly, no alcohol either and I stuck to a low glycemic index food. It has worked for me, I lost weight, did not get puffy, I don t have any food cravings and I imposed a military regime in the sense that Pred messes up sleeps and so much more so I get up, eat, drink, work, walk at very precise time everyday. It also got me into a routine like a new born, and gave me a focus. i consulted a naturopath who also did intolerance tests, as food can contribute to inflammation, she put me on supplements to conteract side effects like loss of bone density, and other issues.

Again, this is not easy, it might not be the answer to some of your issues, but it did work on myself and other people here. It is hard, I am french so no bread, no cheese....hard! But I feel in control more than less of the meds.

I just got back from the US, before I went the group gave me great advice which I followed and I now will get into reading the tapering down program of Lady Dorset. The drastic fast drop in meds messed me up big time. Even the naturopath when I told her said the drop was too steep to quick!

I also bought a fitbit...never thought I would, and it helped too.

We are lucky to have been diagnosed and on treatments.

Marie

[Mobley678]

Hi Vicky just saw your post. I too was diagnosed with same thing early this year although had gone on a bit before that. Would love to be able to chat with someone who has recent experience..I too feel I am so done with this but at same time need to be able to talk about the lead up to experience and the now feeling experience. If you feel you could do...that would be great.

[PMRpro Ambassador in reply to Mobley678]

Everyone is welcome to chat to everyone else on this forum - just start a new thread with your story and plenty of people will chat to you!